# Fertility & Gynaecology Acadamy (Amin Gorgy) : Part 8



## Skybreeze

New home ladies
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## ratsy

hi lalaby 

im pleased  its ok thanks for all your help im going to phone dr G  secetary now and see if i can change my appointment time from 11 to 10 

cozy how you doing  

R x


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## Cozy

Ratsy,

I'm doing ok thanks, just taking each day as it comes at the moment. Enjoying the novelty of being pregnant... its been 5 years since I was last pregnant.

I wouldnt worry too much about your appt time. 11 will be fine unless it is better for you to change it.

Cozy


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## ratsy

hi cozy 

Im so pleased for you good idea you just enjoy it and youve got alot of months to do so  

I just phoned and i think i spoke to dr G i changed it to 10 so i know ive got loads of time .

I need your advise i think it was dr G  on phone and honestly i could hardly understand him i was just going to phone him after i get my results but bit worried now i wont understand him and i dont like to keep saying can you repeat it you think its better to go in person   its just im so far away 

R xx


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## ells

Just bookmarking ladies.

Hope you are all well.    

Ells


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## deegirl

Ratsy - I live in N Ireland and I had a similar debate, I decided to go in person and am so glad I did.  I went about 3 weeks ago and decided to go without my husband to cut costs.  I had a great day and fitted in plenty of shopping!  He asks that you bring your results with you so that you can look at them and then goes through each one by one.  I found myself asking him to repeat things even though I met him in person, however that said he probably had difficulty making me out also!!!   

Ells - hope you're well, haven't heard your news in a while.  How're things?  Hope your mum has made a good recovery?  

Dee x


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## Zeka

Thanks for feedback on 25mg pred!! - hmm, sounds like some hoovering up may be starting as of tomorrow then, best clear the cupboards after our NYE party! ...not really conducive to losing the bellies from previous IVFs is it    Anything for a bubba though eh!
....can't wait till my first scan tomorrow as my left ovary feels like somone squeezing an orange every 5 mins. I'm surprised Mr G didn't do a day 1/2 baseline scan and have to admit I am a bit concerned I've got a cyst doing something nasty.  

Ratsy, Dee - I found him tricky to understand on the phone too. Feel sorry for my DH who isn't English so is even harder for him.

 to us all 
Zeka x


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## Cozy

Ratsy,

I did mine over the phone, but I prepared a little as I always find him quite difficult to hear and understand on the phone. I read my results and with the help of Dr Beers book I jotted down some notes and questions. As he went through each test result I asked any relevant questions and it all worked out fine. Though I did have to ask him to repeat himself a few times. At the end of the day, we are paying him alot of money and if we dont understand something then we are more than entitled to ask him to repeat thing. He is not the most coherent of people, even in person  

You have to do what you think is best for you. For me the staying at home and not doing a 7 hr round trip to see him was the best thing for me - phone was far easier.

Cozy


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## ratsy

Girls dont know what to do now  

I think when i meet him il know what to do then i just told dh and he rolled his eyes and said go again  

Men huh   

Your so relaxed cozy over tx i wish i was same you seem really calm over things  

R xx


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## Chicky Licky

Hi Ratsy

I'd go in person if I were you. I struggled to understand him, although I'm hard of hearing too and do tend to lip read a little. I was really glad we didn't do it over the phone.

Shellie
xx


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## bubbles09

Hi ladies

I am thinking of having the full immune testing done with Dr Gorgy. I was wondering whether any of you could give me an idea on prices including the consultations and how long it takes to get the results. Do they also do all the tests on the first consultation?

Thank you very much.

Love bubbles xxx


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## ratsy

hi shell 

Im thinking of going back but might go with my mum instead save on money it will only be my fair then 

but its the getting time off work thing aswel soon as dh cant understand him himself he will say go back   but i also agree with cozy its easier to phone its les hassel i just dont know   

your involved with going to greece at mo arnt you god now thats a minefield hope your taking notes incase i need you   

R xxx


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## Cozy

Bubbles,

the 1st consultation is £120 and then £90 for any further consultations.

If you go on a Mon/Tues/Weds before 1pm then you can have the consultation and tests done on the same day. The cost of tests depends on what you have done.  They range from about £1200-£1800. Some of the tests are sent to Chicago and take approx 10 days to come back. Some are done at TDL, where you will have the blood taken, 2 door down from FGA and will be done in a few days. It is best to wait for them all to come back before having them sent to you either by post or fax.

Once you have the results,  you will then need a consult with Dr G to go through the results and any possible treatment you will be having. This can be done by phone or at his clinic.

it is all quite expensive, but will hopefully be worth every penny

Cozy


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## bubbles09

Thank you Cozy.. Congratulations on your pregnancy xxx


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## Sprinkles

Hi ladies, just book marking


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## Ourturn

Zeka - I was on 25mg when pg in Sept and was ok, just had an increased appetite! 

Ladies I had a phone consult with Mr G and it was fine. Had him on loud speaker and dh was there. We had our questions ready. Had to ask him to repeat himself once or twice but didn't find him too bad to understand 

Annax


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## bluprimrose

just booking.

happy happy new year everyone - here's hoping and     that all our dreams come true in 2010.

bpxx


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## Louiseb26

Hiya Ladies

Happy New Year to you all.
Goodluck to everyone and lets hope that 2010 will make all our dreams come true.

        to you all.

Lou xx


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## ratsy

HAPPY NEW YEAR LADIES  

may all our dreams and wishes come true for 2010 

R xxx


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## Zeka

Here here!!
Glad to wave goodbye to 2009 and welcome a fresh start. May it be a great and bump-ful year for all of us
Zeka x


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## deegirl

Ratsy and Zeka, I second that!!!  

Ladies can anyone tell me what tests Dr T requires before having LIT with husbands blood please.  And how long do they take to come back approx?  Thanks.

xx


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## Cozy

Dee,

I have replied on the other thread you posted on, but this is what Dr T emailed me...

We usually do two LIT, a primer and then a booster in about 4 weeks. We ask for a repeat of the LAD to see the results. The antibodies should stay high for 6-9 months. Patients normally do the second LIT at least one month before a cycle to avoid steroids and other immuno-modulating therapies (which should be done closer to the cycle). All donors need testing: CBC, CRP, anti-HAV, -HBV, -HCV, VDRL, HTLV, HIV I+II, EBV, CMV. Whether they are done at home or elsewhere is up to the donor, but must be done before donating blood for the LIT. 

Cozy


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## sarahh

Just did a really long post & lost it arrrgggghhhh 

Anyway, hi all, i haven't been on for ages but Happy New Year - may 2010 be the year of good luck for us all.  

Cozy - congrats on your BFP!  Well done honey.  I know long journey etc but you're over yet another hurdle.  

Deegirl - I did post a list of tests req'd for husband LIT with Dr T - prob in investigations & immunology somewhere.  

I've been taking Cilest for a couple of weeks, waiting for DH's sperm analysis test results to see if any imrovement since last cycle then decide if we cycle this month.  Does anyone know when next Dr T date is and also when is Dr A booking for now?  

Good luck to us all 

Sarah x


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## Ourturn

Sarah - next date in athens is on the 12th Jan. I am going over so could book you in if you wanted? Think Dr A has spaced from March. But did someone say Mr G will be starting to to LIT? That would make life soooo much easier" 

Ladies - I will e-mail Mr G but what do you think. 
He told me to take humira start of Jan, 1st injection, then 2nd one 2 weeks later.
problem no1....I'm getting over a throat and sinus infection...still a bit snotty...do I need to wait a bit
problem no 2 ....have 1st LIT booked in Athens 12th Jan...won't this affect Humira
problem no 3...he wants me to have ivig and intralipids during stimms.....2nd LIT will be during day 8 of stimms

aaaaargh! Blinkin nightmare due to infexibility of nhs clinic....but as my LAD results were so bad (and mr G thinks its my main reason for miscarrying) I felt LIT had to be the priority and it can lower nk's to.

Any idea what he'll say?

Thanks 

Anna 

Anna


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## Donkey

Hi Sarah   

Before Christmas Dr A was booking for about March time...as for Dr T, I am going on Tues 26th so as I'm sure you know it's in 2 week cycles.

Rumour has it that Dr G is trying to set up LIT for around March / April time.

Hope that helps

Donkey xx


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## Cozy

Sobroody,

dont know if this will help or confuse matters even more, but I was given 2 lots in info re taking Humira, one from Dr G and one from Dr T. I went with Dr T's advice in the end.

What Dr T told me to do was have my 1st Humira 1 week after my 1st LIT then my next one 2 weeks later.

Cozy


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## ells

Happy New Year ladies      .  2010 start of a new year and a new decade may it bring us all the things we wish for most and fill our lives with lots of happiness.

Ells


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## Chicky Licky

Hi Anna (Sorry, just realised I've been calling you Anne by mistake on my pm's! oops!)

I can't help with your Humira question, but I think it's just steriods that you have to avoid close to your stimms. I think you should be fine with Intralipids as you take these about a week before EC (don't quote me on that though!) 

I read last night that the 2nd LIT needs to be no less than 3 weeks before the ET. Not sure how correct this is, so probably best to check with Dr G to see what he thinks. 

I'm sure they'll be a way around everything for you. I hope so anyway, as I'm looking forward to meeting you on the 12th!

Let us know how you get on. 

Shellie
xx

Cozy - just read your post - what do you need to take Humira for then? I'm still waiting on a couple of level 1 tests to come back from Dr G (the ones my GP coudn't do, incl MTHFR & Karyotyping). I also have a uterine biopsy to come back. Btw - just read your HCG numbers on another thread - they look brilliant hun!!!


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## Ourturn

Shellie - other ladies have had lit during stimms...its not ideal as they like to see if it has worked before you start tx, but its ok apparently 

x


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## Cozy

HI Shellie,

I had Humira because I have uNK cells (CD57) and they respond better to Humira than steroids.

Cozy


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## Chicky Licky

Anna - glad to hear you'll be fine to have your 2nd LIT during stimms. 
Btw, Lou and myself are meeting at the Travelodge then going for eats. I think I've pm'd you the time. Is that ok for you too?

Cozy - thanks for the info. I don't think I'll need Humira then as it's my CD3 I have to take care of and I think that's what I'm having Steriods and Clexane for. 

I'm really itching to book our flights to Brno as they are so cheap at the mo, but I'm bothered about doing it before I have the straggler results back from Dr G. Plus I have high Thyroglobulin levels and my GP doesn't know what to do about them yet! 
I think I might consult Dr T on the 12th, as I should have my results by then, and see what he says. I won't be seeing Dr G until the end of Jan for my Saline Hyst so don't want to wait until that consult to book our flights. What a dilema heh! What would anyone else do in my shoes?
I'm in two minds to just book our flights (as only £120 ish rtn for both of us at the mo) and take a risk on things. Decisions, decisions...!  

Shellie
xx


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## berry55

HAPPY NEW YEAR GIRLS!!!! 2010 is gonna be a great year!!!   

I need to catch up with everyone as i have not been on so much the past few days as been so so busy with partys and stuff. I will b back to norm in a few days. I phoned Dr G on wed and he said my results were back and they were getting posted out to me then. Still not recivied them, i think i will get them on tuesday as its a bank holiday in scotland on monday..... ohh the wait. I do have a funny feeling i'm gonna be very upset with these results. Would it b ok if i post them on here to get all ur views on them as i prob wont b able to speak 2 dr G straight away. 

Berry xxx


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## sarahh

Berry - of course, post them on here, I'll try to help out!!  Seems fairly certain with your history that something is amiss..... its a long old journey embarking on the immune issues but i've met so many people trying for so long who have overcome their immune issues & are now pg so there is always hope. 

Is Dr G def starting LIT from March sometime?  He's been talking about it for a long time!  May be a bit late for me as I'm hoping to get the next cycle out the way before then tho! C'mon Dr G hurry up!  Wonder how much he's gonna charge for it tho    !!! 

Ells - hows things going with you hon?  

Sarah x


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## Donkey

Evening girls

Can I just confirm (before it's too late) that I or DH don't need any extra tests or results if I'm booked for donor LIT?

xxx


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## agate

Donkey: you don't need any tests for donor LIT with Dr T - just your LAD and DQas - depending on how busy he is though, Dr T might have time to look over the rest of your file and give you his opinion on any Q's you might have - but it seems as though he is often running a bit late - so its up to you if you want to take anything else with you that you want to discuss - he is a trained immunologist so if you have any immunology questions then he's the man to ask.


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## ells

Hi Ladies,

Dee   thanks hun.  My Mum is doing really well, pretty much back to normal.  She just has to get her blood thickness right as its still a bit high.  Have you booked your LIT tx yet?  How is your mum doing?

Sarahh, welcome back hunni   .  Are you doing a full fresh cycle?  When are you planning on starting? Are you doing it with Dr G or the Wessex? 

Sprinkles hun, hope you had a good festive season.  Any plans for 2010?

Berry, I am sure that everyone here will help translate   your results.  Dont get upset about the results though hun, I was quite nervous and Dr G just said 'dont worry we can fix this'.  I knew something was wrong and I was just cross that my first clinic didnt do some of the tests that we had done when we asked for them as it explains why things werent happening.  You will get answers hunni and I think it will leave you feeling that you have had your eye's opened and the lights turned up - IYKWIM      .

Lalaby, how are you doing hunni  How are you feeling?  When have you got your next scan?

Cozy, how are you doing?  I bet you are still on    

Donkey I dont know what tests but I do know you have to have a few before they will do the LIT.  I think I remember the girls saying that Dr T would do some of them but not entirely sure - sorry I cant be of any help.  

Shellie, that really is a bargain price for the flights.  Which tests are you still waiting for?

Anna, I am due to have my first Humira next Monday - I have managed to get this for my crohns so am having it slightly differently - a nurse has to do my first injection and then I think I do the others.  My doctor has just said to me that you cant have any infections and that if you have a cold best to wait until clear.  Hope this helps.

How is everyone else?  Hope you are all okay.

AFM, well we are just waiting on our set up appointment to come through from the clinic as I think our blood tests have come back okay - I am guessing no news is good news (and they have been open over Christmas and New Year).  As I said earlier having my first lot of humira next Monday, I am looking forward to it as I am hoping that it will make my crohns symptoms settle and maybe disappear for a bit!  It will also feel as if we are finally starting again.  My sister got engaged just after Christmas which is great and I am really happy for them both but she hasnt stopped talking about weddings and wedding arrangements since and is starting to drive everyone a little bit   .  I think she has forgotten then my parents arent millionaires   . Still its early days and they arent planning on having the wedding until 2011, she's a teacher so has to plan it during the holidays.  She's also quite bosy and is a bit hot headed so I am hoping that she doesnt turn into a nightmare   her OH is quite good though and does tell her off when she's going OTT   .  It will be nice to help with the plans etc but I think I am going to keep a low profile as I dont want any stress I will just jump in when she gets bit silly and try and calm things down - wish me luck   .  
Right enough waffle... hope everyone has a great Sunday  - the first of what will be a good year!!!

Love Ells


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## Louiseb26

Hiya Ladies

Ells - Thats great news that you got your Humira from your Dr...sorry your having to deal with crohns on top of your tx...cant be easy for you.

I was wondering if anyone could tell me where is the cheapest place to buy Humira.Is this injection hard to do? 
Hope everyone is doing ok.And enjoying your last day off  

Lou xx


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## agate

Louiseb26 said:


> I was wondering if anyone could tell me where is the cheapest place to buy Humira.Is this injection hard to do?


Good places to try are Healthcare at Home (if you search on here for Jade Herrington's phone number - she is the lady at [email protected] who deals with humira, IVIG and intralipid) - and if you are near Morrison's their pharmacies can sometimes get drugs at cost. If you get it sent mail order it needs to come in a coolbox with ice - [email protected] are all set up to do that. If you collect it from a local pharmacy they must understand that they have to keep it refrigerated and you will need to take a coolbox and ice packs with you to fetch it home and then put it straight in the fridge. Don't buy it until you get your TB results back in case you are one of the rare people who can't get a response on the TB test or come back positive for latent TB - and can't use humira - otherwise you will end up with a packet of very expensive but useless drugs in your fridge (like me).


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## niccad

Wow - just had ~20 pages to catch up on. Happy new year to everyone.
cozy - many many congratulations. I'm soo happy for you.
BP - I'm so sorry hon. I hope that you managed to enjoy some of Christmas although I can only guess it was a huge struggle. I hope that you're busy formulating a new years plan xx

Hello to everyone and hears hoping that 2010 brings us all lots of bumps and babies. 

I finally got my follow up TH1/Th2 results back and am pleased that they decreased from 38 to 26... YIPPEE! This means that the immune tx worked and I can get on with a fresh cycle. I was worried as I didn't take humira despite DrG suggesting it as I had run out of time. Starting stimming on short protocol this evening... praying already that this is the time it'll work


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## Louiseb26

Thanks alot Agate.Will have a look how much it is.

Lou xx


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## agate

niccad said:


> I finally got my follow up TH1/Th2 results back and am pleased that they decreased from 38 to 26... YIPPEE! This means that the immune tx worked and I can get on with a fresh cycle. I was worried as I didn't take humira despite DrG suggesting it as I had run out of time. Starting stimming on short protocol this evening


Niccad - that's great news - I hope everything goes really well with your stimms - and that now you've got your TNFa down your eggs 'will have the edge' this time over any immune probs.

A x


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## cheriecherry

Hello ladies...
Happy new year....
i was wondering if any of you could help me...

I have been thinking about going to Mr G for immune testing.... does anyone know if there is a waiting list for an appt?

We are planning to start cycle no.2 later on this year, bit complicated background... my DH has a translocation so we need PGD to test for unaffected embryos... we have had one fresh cycle in NOv 08 which resulted in a chemical pregnancy...had a frozen cycle in July 09 which didnt work and we have been TTC naturally for over 3 years but its not happening...we have both had basic tests done, i have had the blood tests for lupus- anti congulant  and thrombolia (excuse the spelling) and all ok... but i cant seem to shake the feeling that something else is wrong ...guess i maybe clutching at straws but feel like i need to get tested for much as i can before i start the next PGD cycle coz we only have funding for one more cycle and if it doesnt work then we really have to rethink our options....


so i guess what i am asking is do you think its best to go to MR G for the immune testing beofre we embark on next cycle? i know it is very expensive and worried about the whole finance as  PGD costs over £7000 at Guys Hospt.... do a lot of ladies go for immune testing after 1 or 2 failed cycles ?

Also- Guys dont belive in the Immune issues so would i have to tell them about it?

sorry if this is has been asked a million times, and sorry if its a silly question...feel a bit lost at the mo, but trying to stay postive.........

thanks


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## agate

Cheriecherry

I don't think anyone can really answer your question - because its a personal decision. Ladies who come to immune testing tend to wish they'd done it earlier but obviously if they'd got pg they wouldn't still be looking into Tx.

You could get a copy of Dr Beer's book and see if it gives you any clues to think that you might have immune issues or you could try the tests on Dr Beer's website https://www.repro-med.net/tests/stest.php but it only gives an indication.

You could try asking Dr Sher on his Las Vegas IVF forum what he thinks of your situation at forums.haveababy.com (because he does a lot of PGD and immunes).

Or you could just book in to see Dr G and get on with the tests - he doesn't normally have a waiting list - make sure your first appt is on a monday or tuesday morning so you can get your bloods done at the same time if you want to.

good luck


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## berry55

thanks for all the kind words... i'm still really bricking it! but i'm sure i will b fine.... i have all of you to keep me strong! xxxx


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## ratsy

hi agate 

where can you get your TB blood test from ?? is it your docs  i know il need humira as ive got high unk cells 7.7 ive tried the steroids but its not enough to lower them 

Thanks 

R x


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## agate

Ratsy

I had the TB test done at the local private hospital but they send it to TDL for analysis.  There are 2 tests which are equivalent - the Quantiferon TB gold that TDL does (which I only got invalid results from - my white cells are too feeble) and the Tspot TB (which I didn't have).  I couldn't get them on the NHS because I wasn't having the treatment (the humira) on the NHS.  There are older tests Heath and Mantoux which use skin pricks but they are even more difficult to get a clear result from than the Quantiferon and Tspot so are probably not worth wasting your time on. 

If you are in London I'd go to TDL but elsewhere I'd try whatever your local private hospital is.


Berry: Whatever your chicago's show, Dr T has a Tx for it.  High TNFa = humira, High NKs = IVIG/intralipid & prednisolone, Thrombophilia mutations = clexane, high CD19+5+ = extra gestone etc... no need to panic at all.  For a lot of us, getting some clear abnormal results on the chicagos was a positive because it meant we could finally get some answers and effective Tx.


A x


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## Louiseb26

Hi Ladies

Can someone explan to me what this means please.I cant get my head around the results...  
TNF-a:lL-10(CD3+CD4+) 47.4  Ratio  13.2    30.6
LFN-g:II-10(CD3+CD4+)  11.3  Ratio  5.8    20.5

T-cells IgM+ 11.1
T-cells IgG+  10.4
B-cells IgM+  16.9
B-cells IgG+  31.8

Thanks loads ladies.

Lou xx


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## Zeka

Another question to add into the mix if anyone can tell me: how do you know if you have uNK as opposed to NKcells? Do you have a biopsy to find out? At what point is this recommended?
Thx Zeka x


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## ratsy

agate 

Thanks for that i know i sound thick  but im going to my local hospital on fri to get my notes so do i just ask for the TB  test or is there a name for it    its all so complicated 

Thanks R x


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## agate

ratsy said:


> do i just ask for the TB test or is there a name for it


You want a Quantiferon TB Gold or a Tspot TB test (Quantiferon and Tspot are both brand names of test making companies) - but you should ideally check with Dr G if he is the person who will be prescribing humira because he is the person who will have to be satisfied that you are clear of TB before advising you to go ahead and take the humira. If you google the Quantiferon website you will find info about the test and how it works - it is a lot more fiddly than the average blood test because whoever draws the blood has to do lots of swirling and incubating the tubes for the right amount of time before they can be sent away for analysis.



Zeka said:


> how do you know if you have uNK as opposed to NKcells? Do you have a biopsy to find out? At what point is this recommended?


Yes you can only tell from a uterine biopsy which is usually done around about day 21 of your cycle (I think) - the lab physically counts the numbers of cells using a section under a microscope. Dr G will advise you whether you need this depending on your medical history and the results of your chicago tests.



Louiseb26 said:


> TNF-a:lL-10(CD3+CD4+) 47.4 Ratio 13.2 30.6
> LFN-g:II-10(CD3+CD4+) 11.3 Ratio 5.8 20.5
> 
> T-cells IgM+ 11.1
> T-cells IgG+ 10.4
> B-cells IgM+ 16.9
> B-cells IgG+ 31.8


Your TNFalpha (an inflammatory marker) is high compared to your Interleukin 10 (an anti-inflammatory marker). This means Dr G is likely to suggest Humira which is a drug that blocks TNFa because high levels of TNFa damage egg quality and attack the implanting embryo and growing fetus - it also means that your NK cells are probably more activated/have a higher killing power than average (because activated NK cells are one of the cells in the body that produce TNFa - but you will get this confirmed when you get your NK assay results back. Dr G is likely to recommend prednisolone and either IVIG or intralipid or both depending on the combination of your TNFa and your NK Assay - the NK Assay will show you whether your NKs are best suppressed by intralipid or IVIG. Prednisolone is a few pounds. Humira is about £750 for a packet of 2 shots which you do at home (you'd have 2 shots 2 weeks apart and then maybe retest your levels - or start your cycle regardless). Intralipid and IVIG are both given by drip at Dr G's or by Healthcare at Home. Intralipid is £285-£350 per drip. IVIG is £1275-1350. Its impossible to know in advance how many drips you would end up needing if you got pg cos Dr G would continue to monitor you and advise you as you go along.

Another good idea is to try and reduce your TNFa naturally as much as you can. Saturated fats are bad. Chocolate is bad (because of the cocoa and the sat fat), green tea is good because it contains quercetin, tumeric (the curry spice) and piperine (black pepper) are good, pomegranite juice is good, raw garlic is good. High dose vitamin D supplements (50 ug per day) are supposed to be good (esp if you are dark skinned or don't get outdoors much). Some people swear that a gluten free diet has helped them - but basically avoiding anything that you personally are intolerant for should calm your system down.

Your B cell IgG+ LAD is a bit borderline - its over 30 which is good but over 50 is better - It is a measure of whether you successfully make blocking antibodies to your DH's DNA - so that your body knows how to recognise it (and should therefore recognise and protect a pregnancy resulting from your DH's DNA - however if you have not sustained a pregnancy before it is impossible to know whether it will rise naturally when you get pregnant or not - a lot of ladies with a low LAD decide to have LIT just in case to make sure their body will have the right response rather than taking a chance - it will be your choice though - particularly as you already have a level over 30 - Dr G will give you his view though - but no-one can really tell you for sure whether you need LIT. Its probably going to be fairly low down on your list of options compared to humira, prednisolone and IVIG/intralipid though.

hope this helps


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## MissyMinx

Hi Ladies, I wonder if I can please join you on this thread.  I've had 2 failed IVF's to date, and after seeing Dr Gorgy I've been told I need the full shebang of immune tx.

I'm starting with LIT treatment in Athens in March, although I have heard that Dr G intends to start offering LIT around then too.  Then we'll be having Humira, IVIG and Intralipids, before hopefully looking at ICSI around May/June time.

I have some weight to lose, and so the health kick is on in earnest.  This will be our last try due to finances, so it really is make or break.  I'm a poor responder and have very low fertilisation rates, so we're keeping everything crossed that we get to ET as our first hurdle.  It's my dream to get a couple of snowbabies to put on ice, but I can't think that far ahead for now.

I'm looking forward to chatting with you and getting to know you all.  Sending you all   and  

Love,

Em.x


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## deegirl

Missy Minx - welcome to the thread.  There are some really knowledgable and lovely ladies on this thread so you're in the right place.  I'm very much a 'beginner' also so know what it's like not knowing things!  

Girls - I'm hoping to have my first LIT around the 9th March (if I can get hold of the man!!  ).  I've worked out that Dr T will (going by 2 weekly slots) be doing LIT that Tuesday.  However I worked out that 4 weeks after that is Easter Tuesday so that would obviously mean that he's not be doing it that day.  So what do you think - would I have to have 5 weeks between 1st and 2nd LIT or would he reschedule the first LIT??  Just thought some of you might know who may have experienced a similar situation over Christmas.  

Thanks girls
Dee x


----------



## deegirl

Missy Minx - in relation to your query over Dr G providing LIT, he did tell me that he wants to set up provision for it.  However I'm just worried that it won't be in time for early March and then I'd be in a mad panic to get an appointment with Dr T (and from what I've heard that can be quite a task!).  However I guess there would be no harm in cancelling an appointment with Dr T if Dr G has set it up by then.  Hope this helps. xx


----------



## Zeka

Hi Dee, have you based the easter dates on the orthodox calendar or gregorian (?) as guess there's a high chance Mr T's clinic could be closed over orthodox easter?...just asking dh when that falls...been told orthodox easter sunday is 4 April. 
Zeka x


----------



## agate

deegirl said:


> I've worked out that Dr T will (going by 2 weekly slots) be doing LIT that Tuesday. However I worked out that 4 weeks after that is Easter Tuesday so that would obviously mean that he's not be doing it that day. So what do you think - would I have to have 5 weeks between 1st and 2nd LIT or would he reschedule the first LIT??


Dr T's schedule is to do LIT every 2 weeks but then to skip it if it is a greek holiday or if it his personal holiday - can you ask one of the girls who is going out on 12 Jan to ask your scheduling question for you? if no joy one of us 26 Jan girls could try instead? But I expect he will say that a 5 week gap would be fine if that's how the dates work out.


----------



## Cozy

Zeka said:


> Another question to add into the mix if anyone can tell me: how do you know if you have uNK as opposed to NKcells? Do you have a biopsy to find out? At what point is this recommended?
> Thx Zeka x


Zeka, in answer to your question - you would need to have a uterine biopsy to find out if you have uNK cells. Dr Gorgy can do those and he would advise you the best time to have it done. If you had it done and your levels were over 5% you would be prescribed Humira.

Cozy


----------



## Louiseb26

Agate...thank you so much lovely.You have now answered everything in one go...your a star.

Lou xx


----------



## sarahh

Can someone let me know how long the TB result takes to come back.  I'm waiting to hear whether I can take Humira from the chap that invented it no less as I've had bladder cancer before (we went to see a consultant urologist regarding DH's sperm) and it was mentioned during the consult that I'd had bladder cancer before which he was interested in being a urologist and its very rare in my age then I asked him about Humira which he'd not heard of, googled it then said he knew the chap that invented it.  

However, I'd forgotten about the bit about having the TB test until this morning and am now wondering whether it will be too late anyway.  I'm on day 18 of my normal cycle, started taking Cilest on day 2.  

Also can anyone remind me do you stop taking the Cilest when you finish one pack or wait until your period turns up whilst on it - what does Dr G say, can't remember - think my period turned up early last time whilst still taking it anyway so it wasn't an issue for me.


Sarah x


----------



## agate

sarahh said:


> Can someone let me know how long the TB result takes to come back.


If its TDL then their turnaround for TB gold is 3 days. If its somewhere else I guess you'd have to ask them?

You'd need enough time after getting the result to get the humira delivered and take 2 doses 2 weeks apart before you start your cycle.

I had to do without it though, cos my TB test kept coming back invalid result - and things have worked out ok so far.



sarahh said:


> Also can anyone remind me do you stop taking the Cilest when you finish one pack or wait until your period turns up whilst on it - what does Dr G say


sorry don't know.


----------



## Zeka

Agate, what levels were your tnfs out of interest?


----------



## Cath34

Wow Sarah Humira eh? 
Cilest I thought was just to regulate your cycle so until you bleed I thought but ask Dr G he wont mind. Not long now then? What is his plan after cilest, straight into stimms? or down reg first?


----------



## ratsy

Agate 

Thanks for info il google that ,i was going to have the test done before but will wait now to see dr G . can you remember how much it cost to have the blood test 

Thanks 

R x


----------



## agate

ratsy said:


> can you remember how much it cost to have the blood test


I think it was £80 but I'm not abs sure I'm looking at the right one - its prob cheaper at TDL.


----------



## ratsy

agate 

Thanks i live in cardiff so il have to have it done in my local hospital il ask on friday at my clinic who il have to see about doing it 

thanks R  x


----------



## deegirl

Wow you girls have been busy chatting!  

Agate and Zeka, many thanks girls, very helpful.

Agate - that's a great idea, I will do that!  

Zeka - yes I checked to see when the Greek hols were and they seem to be Sun 4th and Mon 5th April but I expect that he might take the Tuesday off too.  

Hope everyone's well.  

Dee x


----------



## sarahh

Cath, hi hon, you lurking?!  Thinking of Humira if it doesn't cause any extra risk with my history etc. but think I'm running out of time!  Haven't actually spoken to Dr G - just had the Cilest and started taking on Day 2 after start of af.  Am on day 18 of this cycle. Trying to sort out another LIT for next Tuesday - don't know whether to just book a flight or not!  Trying to save all those £90's that I can!!!!!  How you feeling?  What are your levels doing now

Agate - really interested to know what your TNF levels were?  

DH's sperm results are back - a minor improvement - 5% are motile now !!!! (but tbh any improvement is major!!!) so think we will go ahead with this cycle.  If I can get the LIT sorted out that is....... next battle commencing............ !!! 

Sarah x


----------



## Ourturn

Hi who asked about unk's? These are uterine killer cells and you only know if you have high levels if you have a biopsy..which I did...ouch! 

For those of you positive for MTHFR (sp?) if you get pg how long do you stay on the celexane for? 

Need your opinions ladies. My results show I respond better to intralipids than to ivig, however neither gets my levels to the magic 15%...but the reduction is significant (go from 30 to 20%) which Mr G says may be enough. I am also taking humira, having LIT x2 in Athens, steroids etc etc. 
Mr G says I should have both ivig and intralipids...but ivig is so incredibly expensive. Should I still go ahead and have it even though tests show intralipids work better for me? LIT has been shown to bring nk's down, so with that, steroids & humira won't that be enough in combination with intralipids? 

HELP! 

Anna x


----------



## Cozy

Anna,

IVIg and Intralipids work almost identical for me, bringing my NK's down to 18.5 for IVIg and 18.4 for Intralipids. Dr G said he would like me to have one of each pre-conception as they are different products and possibly work in different ways, he said it would cover all bases to do that and I would have maximum cover - it made no difference to him what I spent as I was having it done with HCAH.

Anyway, I had one of each before ET and have had 1 Intralipid a few days after I got a BFP. I will be having another Intralipid next week. For me it appears to be a winning formula and I would do the same again. However, the cost is a factor and if one worked alot more than the other then I would be more inclined to go with whatever was the better for me regardless of the cost. If the cheaper one is the better one then all the better. 

What you could do, is have one of each pre-conception then just have Intralipids after that. I know IVIg is expensive but it may be money well spent and if that what Dr G recommends.  I guess only you can make that decision.

I also had 2 lots of donor LIT, to which I got a fantastic response. Humira and Prednisolone aswell.

Good luck 

Cozy


----------



## berry55

Hi girls,

I'm just waiting on the post 2 arrive... i really  hope the reulsts r gonna be in my post 2day!! If not i'm gonna phone Dr G and just make sure they did get sent out. I was wondering.... will all the reuslts come in at the same time? or will i have to have a phone consulation with Dr G with each set of results?? 

Berry xxx


----------



## Ourturn

Berry - you should call up and ask if the results are in and if so have they been posted out. I called to see if mine were in then had them faxed over as this was quicker

Cozy - thanks for the advice...I was thinking of having one IVIG during tx and sticking to intralipids if I got pg. Great to see it has worked for you!  

Anna x


----------



## berry55

ok girls the results are in!!!!!!! I dont have a clue about them... i'm so so confused. I'm gonna post them in like 10 mins if you all could help me it would be soo much appreciated. xxxxxx


----------



## niccad

Anna - my levels came down far more with intralipids but DrG precribed one of each prior to ET for me. If it had worked I would've had intralipids afterwards. 
This time I'm doing intralipids only - but that's purely because I had a bad reaction to the IVIG and don't really want to repeat it (I'm sure DrG doesn't want to either as I was there for about 6 hours!!). If you can afford it I would stick to what DrG suggests. He explained to me that they work in different ways and that intralipids are still so new in comparison to IVIG that he would prefer to do both.
My NK numbers actually reduced to almost the exact number the lab showed would happen with intralipids despite having LIT, steroids, clexane and gestone on top. Good luck x

Agate - how are you doing?? You are so full of advice on the thread but haven't said much about how you're doing... how is the bump progressing? 
You mentioned that TNFa effect egg quality   which I'm a bit worried about as i'm sure my levels are back up again, and will be until I start all the immune drugs again (on about day 8 of stimming). Surely this will be fine for implanatation but not for egg quality. Suggestions?? xxxx

Berry - look forward to seeing your results... fingers crossed they are good
Hi to everyone else 
Nic c


----------



## berry55

DQ ALPA GENOTYPE

My Hubbys - 0501.0505
Mine - 0104/0105.0505

TH1:TH2 intacellular cytokine ratios

TNF-a:IL-10 (CD3 +CD4+) 57.6
IFN-g:IL-10 (CD3+CD4+) 17.2

IMMUNOLOGY

Quantiferon- TB GOLD TEST - NEGATIVE (Neg = <0.35)

NK ASSAY (% KILLED) 
Name Result
50:1 13.5
25:1 9.0
12.5:1 6.5
IgG conc 12.5 50:1 6.5
IgG conc 12.5 25:1 5.7
IgG conc 6.25 50:1 4.6
IgG conc 6.25 25:1 3.4
% CD3 83.6
%CD 19 4.8
%CD 56 9.6
% of CD19+ cells, CD5+ 35.4

**notes > 10% reduction in killing at each effector/target ratio.

LEUKOCYTE ANTIBODY DETECTION

Flowcytomerty NEGATIVE
(T-Cells) IgM+ 2.8
(T-Cells) IgG+ 2.6
(B-Cells) IgM+ 28.6
(B-Cells) IgG+ 23.3

NK ASSAY W/ INTRALIPID

50:1 w/ Intralipid 1.5mg/ml	6.9
25:1 w/ Intralipid 1.5 mg/ml	3.8

HEEELLLLPPP MEEEE PLEASE!!!!!!!


----------



## Cozy

Berry,

your numbers havent pasted on very well for your NK's, can you update that and I'll let you know what I think.

Cozy


----------



## Cozy

Thats better..


----------



## berry55

i feel so so sick !!! i'm so nervous now!!!


----------



## Cozy

Berry, 

They are not that bad at all.... standby.....


----------



## lalaby123

Berry glad you finally got your results

I will advise you on the NK and TH1:TH2 ratio and leave others to comment on LAD

Your main problem is your TH1:TH2 ratio which is rather high. It should be under 30 and yours is 57.6 this is the highest i have seen on here. This means your body is producing a high level of of TNFalpha which causes inflammation and could attack a growing a embryo and I would say is a good explanation to your past miscarriage/chemical pregnancies. This is treated with Humira. 

Your NK overall activity is not high. Most of us have elevated levels over 15% but yours is 13.5% which is fine so no worries there.....
Your individual NK cell counts are ok apart from CD19/5 which is elevated. People with elevated levels of this tend to be poor responders in other words produce antibodies to hormones, I think Dr G prescribes Gestone in this case instead of progesterone pessaries after IVF. Given your NK activity is not elevated and your other NK cells are not elevated I am not sure if Dr G would still want you to have IVIG or intralipid. My guess is you won't need it or at most may need it very little. 

All in all a good outcome I would say as you can now address what has been causing your failures in the past. 

Happy new year to everyone and I hope it will be a great year for all

Sarahh - nice to have you back and good luck with next cycle

Cath - nice to see you back here too and hope you and bump are doing really well

Cozy hope you are feeling well ...you must be soon due for first scan and must be excited

Sobroody - Ivig has a balancing effect on the immune system and provides you with 'good' antibodies therefore has extra benefits to intralipid from what i understand which is why Dr G likes to use both if needed

hi to everyone else and the newcomers 

I am 12 weeks tomorrow, have felt like sh*t up till about 4 days ago and its been a bit of a roller coaster ride and the ride will continue until babies are viable at 24 weeks but at least I have almost made it to the first hurdle....


----------



## agate

berry55 said:


> DQ ALPA GENOTYPE
> 
> My Hubbys - 0501.0505
> Mine - 0104/0105.0505


You have an 0505 match which is the same thing as a 4.1 match - donor lit MIGHT be recommended to you - but get advice from Dr G and Dr T on this



berry55 said:


> TNF-a:IL-10 (CD3 +CD4+) 57.6


Looks like you are going to be advised to have humira - cos TNFa is pretty high.



berry55 said:


> Quantiferon- TB GOLD TEST - NEGATIVE (Neg = <0.35)


You are clear of TB - so it should be safe to start humira in that respect


berry55 said:


> NK ASSAY (% KILLED)
> Name Result
> 50:1 13.5
> 25:1 9.0
> 12.5:1 6.5
> IgG conc 12.5 50:1 6.5
> IgG conc 12.5 25:1 5.7
> IgG conc 6.25 50:1 4.6
> IgG conc 6.25 25:1 3.4
> % CD3 83.6
> %CD 19 4.8
> %CD 56 9.6
> % of CD19+ cells, CD5+ 35.4


These look ok - except your CD19+5+ which is associated with anti-hormonal activity - you are likely to need at least high dose gestone for luteal support. Not sure whether IVIG/intralipid is any help for this - expect Cozy will give her valuable input.



berry55 said:


> Flowcytomerty NEGATIVE
> (T-Cells) IgM+ 2.8
> (T-Cells) IgG+ 2.6
> (B-Cells) IgM+ 28.6
> (B-Cells) IgG+ 23.3


Would be better if your IgG+ was at least 30 and pref over 50 - you MAY be advised to have LIT - but if you haven't sustained a pregnancy before its impossible to know whether it would rise naturally if you got pregnant - a lot of ladies want to have LIT to cover all the bases.



niccad said:


> Agate - how are you doing?? You are so full of advice on the thread but haven't said much about how you're doing... how is the bump progressing?


Will pm.



niccad said:


> You mentioned that TNFa effect egg quality  which I'm a bit worried about as i'm sure my levels are back up again, and will be until I start all the immune drugs again (on about day 8 of stimming). Surely this will be fine for implanatation but not for egg quality. Suggestions?? xxxx


Its only my opinion and I am not med qualified - but I would take some curcumin pills, drink lots of green tea and pomegranate juice, avoid chocolate and sat fats - and anything you think you might be 'sensitive' to e.g., milk, gluten. Those should try and keep your TNFa down naturally. Did you do humira before? Isn't that supposed to keep your TNFa down longer term? The stuff about the effect on egg quality is in Dr B's book.


----------



## niccad

Berry - I'll mirror what Lalaby says... your NK levels look fine except the CD19+ cells, CD5+. This one is high for me too and DrG prescribed gestone after EC (it's an injection into your bum cheek with a scary needle which looks terrible but surprisingly doesn't hurt much).
Your TNFa levels are high and I'm sure DrG will suggest humira for this as well as steriods. 

Lalaby - can't believe it's 12 weeks already. It's a massive hurdle and I'm sure you can relax slightly more after tomorrow... Glad that you're feeling slightly better xx

Nic x


----------



## Cozy

Berry,

from what I can see and from what little I know, you will need LIT as your (Bcells) IgG+ is 23.3 and ideally they should be over 50. You will probably be advised to have donor LIT as you share a DQ Alpha number with your DH. 

Your NK's are below 15 which is good. This means you wont need IVIg or Intralipids for this

CD3 is upper limit of normal which is fine 
CD19 is normal
CD56 is normal
CD19+cells, CD5+ is high.    For this, you may be prescribed a combination of gestone, IVIG, Intralipids

TNF-a:IL-10 (CD3 +CD4+)    is high.   You may be prescribed Humira for this
IFN-g:IL-10 (CD3+CD4+)      is normal

Do you have Dr Beers book? This will help you decipher these test results.

I'm not very well up on TNFa as I dont have a problem with it, someone else will be best placed to advise you on any other treatment you can have for this.

Have you got any other results - MTHFR, Factor V leiden or Factor II  ?

I hope this helps a little. Though Dr G is best placed to give you advise and what treatment you would need.

Cozy


----------



## Cozy

Lalaby,

well done for getting to 12 weeks. It is a worry isnt it. You've got past the worst bit and over the 1st hurdle. I hope it continues.

scan booked for 12th Jan. This is the day DH and I met 10 years ago, so we are hoping to meet our baby on our anniversary. Can't wait! I just hope we manage to get to see heartbeat, never got that far before.

I'm hoping to get a NHS scan 2 weeks after that.

Take care

Cozy


----------



## niccad

Cozy - good luck on 12th... i'm sure it will be a magical day xx

Agate - thanks for the info on TNFa - I didn't have humira before as I was convinced my embies wouldn't thaw and there was swine flu all over my office. I'm off to buy some curcumin tablets now. Hoping it won't be too late on day 3 of stims   (oh, and nightmare about chocolate as usually i never eat it, but I've been going mad over xmas... ARGH!!)

x


----------



## berry55

Thanks for all the advice girls. I really dont know if this is good or bad. I'm happy that i wont need IVIg but will i need it for CD19+CD5+ ?? i really dont wanna do that. Also donner LIT... What is it? is it blood? and does Dr G do this or am i right in saying i need to go to greece for this? or am i talking total rubbish?  

Cozy - my results for Factor V was homozygous negitive. 

Thanks again for all the answers. I'm now feeling really weird... 

xxxx


----------



## agate

niccad said:


> Hoping it won't be too late on day 3 of stims  (oh, and nightmare about chocolate as usually i never eat it, but I've been going mad over xmas... ARGH!!)


Niccad - don't worry too much - if you've had a good xmas that will help in itself cos stress increase TNFa so if you've been enjoying yourself you will already have a headstart - curcumin is just extract of tumeric - so it might be labelled tumeric in the health food shop.



berry55 said:


> i really dont wanna do that. Also donner LIT... What is it? is it blood? and does Dr G do this or am i right in saying i need to go to greece for this?


LIT is injections of white cells (leukocytes/lymphocytes) from a donor under your skin. About 1 pt of blood is taken from the donor to produce a tiny volume of washed white cells. Paternal LIT (your DH as donor) is available in the UK from Dr A but the nearest place for unrelated donor LIT is athens. There is lots of info on the Lit needed thread in the investigations and immmunology section. Dr G is supposedly going to start doing LIT soon himself but you would need to ask him about when and whether it will be suitable for you. The donor has to be screened for infections viruses for obvious reasons. It is supposed to trigger an immune response in your body that means your body will be better able to recognise your DH's DNA markers to produce a better protective/non attacking response to the implanting embryo which has your DH's DNA.


----------



## berry55

agate- thanks for that info. I know this will sound really silly but i'm so confused.... why would i need LIT?? from my results what shows this? and the fact DH is a match is bad? ohh this is all so so confusing lol


----------



## Cozy

Berry,

LIT is a serum made from the white blood cells extracted from your DH or a donor, which injected just under the skin on the inside of the forearm. If you had it done with Dr T then you have would have 2 lots of LIT, 4 weeks apart, then retest to check if it has worked or not.

At the moment only Dr Tsagaris in Athens does donor LIT. Dr G is starting to do LIT around March time I think, but not sure if he will do donor or not. He seems to push people more towards paternal LIT than donor even if there is a match - not sure why.

LIT is used if your (T-Cells) IgG+ and/or (B-Cells) IgG+ are under 30. They prefer your levels to be over 50 to get the best response but some say over 30 is ok.

Re the CD19+CD5 -These are sperm antibodies and immunotherapy is a good way of treating this problem - hence the use of IVIg or Intralipids.
I was prescribed IVIg, Intralipids and Gestone for this. I also had elevated NK cells, so I had it for that aswell. Dr G will advise you what you need and why. If you have to have IVIg or Intralipids, Intralipids is much cheaper than IVIg (about £1,000 cheaper!)

Cozy


----------



## lalaby123

Cozy - good luck on the 12th it certainly is a special date....just a note of advice if they end up seeing a hematoma in your scan which i hope they won't but if they do make sure to ask them to measure it for you as Dr G will want to know the size to decide what to do......how many weeks will you be on the 12th of Jan? 

Berry - you should be happy and congratulate yourself because you have saved yourself the grief and the cost of another round of IVF which would have most likely failed given your high TNF alpha levels. You can now get the necessary treatment and hopefully keep the baby on the next try. You can do donor LIT in Greece as a safeguard and if you want to cover all bases or you can leave it for now and only do it if you get pregnant. Ask Dr G for his advice. 

Ladies, I am weaning off prednisolone finally yepeeeeee and for past two days have had terrible headache has anyone else weaned off these before and is it a common symptom of weaning off steroids


----------



## agate

Your LAD result B cells IgG+ is less than 30.  This shows that your white cells are not very good at recognising the genetic markers (the DQas) of your DH's white cells.  This potentially means that your body might not recognise his DQas on an implanting embryo (all your embryos will contain one DQa number from you and one from your DH - because that's how genes work).    All the 0501-0505 series numbers are very similar and are referred to as 4.1s.  They are supposed to be a bit more tricky to deal with (provoke more of an attacking rather than protective response) than other matches - so LIT is more likely to be recommended.  To allow implantation and to avoid attacking the embryo/growing fetus your body has to learn to recognise your DH's DNA and protect it- it does this by producing blocking antibodies.  The low LAD numbers show that your body is not good at doing this at the moment.  What you don't know is whether it would learn to do this naturally when you get pregnant or whether it would be better to help it along by doing LIT - which exposes your body to a sample of white cells to trigger the production of blocking antibodies.   A lot of doctors would say that LAD and LIT are meaningless, but of course Dr's like Dr G and Dr T swear by it.  Its going to be your choice in the end, but you should talk to Dr T about it - its something that you could definitely do and it might make all the difference - or you could try the other Tx first and if they don't work go back to LIT - most of us here though are of the 'do everything possible' view so go straight for LIT if its indicated. 

As Lalaby says you could wait and do LIT if you get pregnant - but I would say its easier to do it first if you think you want it - if you wait, its another stressful thing to organise when you should be resting in those first few weeks and if you did find you had to be on steroids for your Tx, the steroids interfere with the LIT - and if you got a fierce attacking response by the time you organised the LIT it could be too late.  but its just my opinion.


----------



## Cozy

Lalaby,

I will be 6+1 on 12th. Though some sites have said I will 7+1.

How quickly are you cutting your dose of steriods? If you are getting headaches try and wean off a bit slower.

Cozy


----------



## berry55

i'm really happy about the results as i think it is a stepping stone for us now. The only thing is the Donner LIT thing... i dont like donner things going into me... i know that sounds really bad, but i just cant help feeling that way. What is the reason for my (t and b cells) IgG to be so low  sorry for all the qns... i'm just a bit   xx


----------



## lalaby123

Cozy - when was your EC? you are whatever you are from EC (fetus age) plus 2 weeks. its different for us IVFies so ignore what the websites say. 

Berry - unless you were pregnant before your LAD levels would be low so your results are as expected and nothing alarming....


----------



## berry55

sorry but 1 last thing i have to add about the DQ alpha genotype... it has been written on the page of DH results 4.1,4.1. and on mine it says 1.4,4.1. is this what u all thought? 

Thanks again girls xx


----------



## sarahh

Lalaby - I had a cracking headache for a good few days poss a week after weaning off the pred - Dr G said come straight off it after last cycle (biochem) but i wish I had come off it slower like I thought I should......  

Berry - yes the 4.1/4.1 etc. is a different way they use to recognise the numbers and yes, what Dr G has written is correct - anything beginning with 05 is 4.1 which I think someone has said is not the best in terms of producing an attacking response in your body.  I'm fairly certain with your DH's numbers both being 4.1 that you would be much much better with donor LIT.  However, this is all getting into unknown territory in that most IF dr's in the uk would not have a clue what you were talking about let along recognise LIT as being a successful treatment.  For me though, I have met a lot of people with long histories of IF or of biochem pg's or miscarriages that have had this tx and are now pg.  I personally believe there is something in it but its all down to personal choice.  If you are totally uncomfortable with the thought of someone else's blood then you don't have to have it.  I felt weird about it and had 2 x husband LIT'S then I had 1 x donor and am now trying to arrange another donor LIT and wish I'd just started with donor in the first place!!  

Lalaby - great that you are still surviving the pg!  I'm so chuffed for you.  Its so nice we have a few pg ladies on here it keeps us going!  

I'm off to chase Dr T again!!! (I will make it next Tuesday for LIT by hook or by crook!!)

Sarah x


----------



## berry55

1 last qn then i will leav u all alone for a while... i think lol ...... what are the dangers of using dooner LIT??


----------



## sarahh

The dangers - well if you want me to be brutally honest, but there is no nice way of putting it really - is that the blood is not screened properly or inefficiently and you contract some virus from the blood you receive.  Its not nice to hear that obviously and its enough to put the frighteners up anyone but I'm afraid that is the risk of having someone else's blood.  Some people may feel comfortable providing their own donor (not related) but that is much more expensive as you still pay 500 euros with Dr T then all the screening tests on top and you'd have to get their DQ alpha numbers I guess?  

Sarah x


----------



## mag108

hi everyone
I have read the thread but too much to respond to !
Had a busy busy xmas period, Dublin and London and family here too so had zero time to myself. Realising yet again that the build up to IVF and now immunes tx is all consuming as one tries to make the very best attempt.

I have LIT in Athens this Tues (there are a few of us going). Then have a uNK biopsy on Sat 16 Jan. Busy gal.

Appreciate the advice on GI diets, I had Candida for yrs and have always felt better off the sweet stuff, but easier said than done eh! However I am thinking of giving the GI diet a shot.

I also wonder what your thoughts are on all of the supplements we take. I take a womens multi vit, spirulina, and DHEA. I am wondering is it good to take the spirulina which is ulitimatley and immunes system support?

Lalaby: delighted for you hun! You are almost there for 12 wks! 

Cozy: you too! I am so chuffed for you hun!


----------



## MissyMinx

Hi Ladies, 

Sorry I'm not quite up to speed with the immunes terminology yet, but I just wanted to pop in and say hello to you all.

Congratulations to Cozy and LaLaby on your BFP's - that's fantastic news.

Good luck to Sarah with your hunt for the elusive Dr T - I'm also on his tail, I'm beginning to feel like a stalker 

Mag108 - best of luck for your LIT tx on Tues.

Berry - sorry I can't help with answers to your questions, but you're in fab hands here.

Agate, Cath, Niccad and Sobroody - hello and lovely to meet you.

I was wondering if anyone might be able to perhaps tell me whether my TNF Alpha ratio has contributed to a poor fertilisation rate in the past.  My results were:

NK Assay (% Killed) Panel

50:1                                              22.7            Limits 10 - 40
25:1                                              12.8            Limits 5 -30
12.5:1                                            8.6              Limits 3-20
IgG conc 12.5 50:1**                        14.1
IgC conc 12.5 25:1**                        13.4
IcG conc 6.25 50:1**                        19.2
IgC conc 6.25 25:1**                        12.7
%CD3                                            *89.4            Limits 60-85
%CD19                                            5.9            Limits 2-12
%CD56                                            4.3            Limits 2-12
% of CD19+Cells, CD5+                      *32.2          Limits 5-10

NK Assay w/Intralipid
50:1 w/Intralipid 1.5mg/ml                  14.5
25:1 w/Intralipid 1.5mg/ml                    7.8

Leucocyte Antibody Detection

Flowcytometry                                  NEGATIVE
(T-Cells) IgM+                                  2.2
(T-Cells) IgG+                                  1.9
(B-Cells) IgM+                                  7.0
(B-Cells) IgG+                                  10.6

TH1:TH2 Intracellular cytokine ratio

TNF-a:IL-10  (CD3+CD4+)                  *44.8  (Limits 13.2-30.6)
LFN-g:IL-10  (CD3+CD4+)                  *29.8  (Limits 5.8 - 20.5)

We've only ever had three embryos fertilise out of our last 2 cycles - I got 13 eggs in total over both cycles.  I wonderd if perhaps taking Humira may help to improve our fertilisaytion rate   

I'm also a bit concerned that with my first tx, I got 10 eggs, of which 6 were mature.  My second ICSI cycle was only done 9 months later, but I only managed 3 eggs despite some high doses of Menopur.  I had my AMH test done and it was at 16.  I'm a bit concerned that my AMH level could be plummeting like a stone, but  I'm almost too scared to get it tested again, if that makes any sense?  We're going ahead with our next tx regardless, but as we're not planning on having the actual ICSI cycle till June, would anyone recommend perhaps a course of DHEA?

The other thing that I can't fathom out is why my LAD is negative even though I had a natural pg back in 2004, will I ever manage to get a good reaction to the LIT tx?  We're going with donor even though I don't have a DQ Alpha match as I believe the results are better.

Sorry - I've just realised how much I'm going on.  My head is absolutely chock full of plans for this next tx, I'm desperate to do everything possible to give us our best chance.  Sending all you ladies   and  

Love,

Em. xx


----------



## berry55

Hi Girls,

just wanted to say thank you so much for all the info about my results    

I'm so so upset about the DQ ALPHA match thing. Am i jumpping the gun by saying i will not b able to carry my DH baby? it has been hand written on our test results that DH is 4.1,4.1 and mine is 1.4,4.1 so does that mean just the 2nd part is a match or both parts r a match? I'm so so upset about this now. The other parts r fine, i just dont get this bit. 

xxxxx


----------



## sarahh

berry don't be upset, you should be able to carry your DH's baby - the DQ Alpha thing doesn't mean that it just means that you can't have his blood for LIT as it will not provoke a reaction in your body as it is a partial match to your DQ Alpha - its better to use blood with completely different numbers.  But he is only a partial match so it may have some reaction but not as much as you'd like - especially when paying all that money for the LIT  

Sarah x


----------



## Jofie

lalaby - congrats on making it to 12 weeks  . Just popping on to say I weaned off prednisolone after 2 months but not gradually enough apparently. I felt terrible for about 3 weeks  - constant headache, irritable (more than usual  ), depressed and my skin got horribly dry. Only just getting over it now. I don't know how quickly Dr G has advised you to reduce them, but I would ask for a second opinion if you're getting headaches as I don't think he really knows. I read that you should taper them off if you've been on them for more than 2 weeks on a much lower dose than we are taking, but he just told me to stop immediately after my first failed cycle. The problem is the body 'forgets' how to make cortisol and that's why they have to be tapered off very gradually. It can also have an adverse effect on thyroid hormone production. You've been on them longer than me, and you're preggers , so I would be really careful. I am never taking them again! 

bluprimrose - I know it's late, but just wanted to say I'm so sorry about your recent BFN.


----------



## berry55

sarahh said:


> berry don't be upset, you should be able to carry your DH's baby - the DQ Alpha thing doesn't mean that it just means that you can't have his blood for LIT as it will not provoke a reaction in your body as it is a partial match to your DQ Alpha - its better to use blood with completely different numbers. But he is only a partial match so it may have some reaction but not as much as you'd like - especially when paying all that money for the LIT
> 
> Sarah x


Thanks hun  I was in tears a wee while ago.. i started to think i would have to go into surrgocy and i actually dont think i am strong enough to do that. So its only the 2nd part of our DQ Alpha thats a match, is that right? So Dr Gorgy might suggest us to still go ahead with dh blood? I know this might not mean anything, but do u think with my history that shows anything? like we r compatable? or am i talking rubbish now?

xxx


----------



## agate

berry55 said:


> So its only the 2nd part of our DQ Alpha thats a match, is that right? So Dr Gorgy might suggest us to still go ahead with dh blood? I know this might not mean anything, but do u think with my history that shows anything? like we r compatable? or am i talking rubbish now?


Berry - don't panic - what it means is:

1) any embryo that comes from you and your DH will have one DQa from each of you. Your numbers are

DH 0501.0505 = 4.1, 4.1
You 0104/0105.0505 = 1.4, 4.1

There is an equal chance of each combination so from your numbers for every 4 embryos, on average you would have 1 each of

1.4, 4.1
4.1, 4.1
1.4, 4.1
4.1, 4.1

which is the same thing as saying that roughly half of your embryos would be 4.1, 4.1 and roughly half would be 4.1, 1.4

According to Dr Beer, getting your body to give the right protective response is a bit more difficult for embryos which are 4.1, 4.1 (but of course there are lots of people walking around who are 4.1, 4.1 (like your DH) who survived their time in the uterus without their mothers having LIT!!!)

2) it does not mean that you are not compatible with your DH or that you cannot carry his baby. It just means that, if you believe the theories of the doctors who believe in LIT (and not all doctors do), your body might need more help to give the correct protective response - and LIT may help to do this - and it MIGHT be part of the reason why you haven't been successful yet.

3) Whether you would be better off with your husband's blood or a donor is tricky. I think you need proper advice from Dr T and Dr G on this. Often if there is only 1 match, paternal LIT is still advised, but I'm not sure if this changes because of the particular match that you have i.e., the 4.1 match.


----------



## berry55

agate- ok i am starting to understand it now. Thanks hun!    Would the fact i have already had a mmc and chemical pregs show anything? prob not i'm guessing. xxx


----------



## agate

MissyMinx said:


> I was wondering if anyone might be able to perhaps tell me whether my TNF Alpha ratio has contributed to a poor fertilisation rate in the past. My results were:


NK Assay (% Killed) Panel

50:1 22.7 (high - your NK cells are more active than they should be)

IgG conc 12.5 50:1** 14.1 (shows your NK cells are suppressed by IVIG)

%CD3 *89.4 (high - suggest autoimmune activity - do you suffer from any autoimmune conditions?)
% of CD19+Cells, CD5+ *32.2 (high - suggests anti-hormonal activity - you are likely to need extra progesterone and might get a better response to stimms if you had immune Tx e.g., IVIG/intralipid/prednisolone)

NK Assay w/Intralipid
50:1 w/Intralipid 1.5mg/ml 14.5 (your NKs are suppressed by intralipids)

Leucocyte Antibody Detection

Flowcytometry  NEGATIVE
(T-Cells) IgM+ 2.2
(T-Cells) IgG+ 1.9
(B-Cells) IgM+ 7.0
(B-Cells) IgG+ 10.6 (low - should be at least 30 - LIT may be helpful)

TH1:TH2 Intracellular cytokine ratio

TNF-a:IL-10 (CD3+CD4+) *44.8 (Limits 13.2-30.6) (high - humira and IVIG/intralipid may help)

would anyone recommend perhaps a course of DHEA? - maybe but wouldn't it be better to check your hormone levels including DHEA first? Maybe getting your TNFa and your CD19+5+ down with immune Tx is a better bet to getting better egg quality rather than DHEA?

The other thing that I can't fathom out is why my LAD is negative even though I had a natural pg back in 2004, will I ever manage to get a good reaction to the LIT tx? I read something about Dr Beer saying that there was a 1 year window after a successful pregnancy where conception should be easier but then for patients with immune issues, it could become much harder requiring more Tx for a 2nd pregnancy.


----------



## agate

berry55 said:


> Would the fact i have already had a mmc and chemical pregs show anything?


very difficult to say because you didn't make it as far as 12 weeks - Dr Beer would prob say that the fact you had this was evidence that you have a problem but other doctors would say that you haven't sustained a pregnancy long enough to make your LAD meaningful. Dr Beer reckoned that if you had several early implantation failures (too early even for a pg test) it would have the same effect on your LAD as carrying a successful pregnancy but other doctors say that the effect on LAD isn't complete until 12 weeks of pg. Its so tricky because you don't absolutely know if you need it, but then if you don't have it and you have another failed cycle you are left thinking if only I'd done that LIT... but then you might skip it and the cycle might work anyway.

I think - get all your Q's written down and have your consult with Dr G and get his view. He will suggest all the Tx s that he thinks you should have which will prob include LIT, then you and your DH decide which ones you are prepared to go ahead with for your next Tx and whether you want to prioritise some of them and leave some of them to try for the next cycle if it doesn't work without them. You do at least have time on your side to try minimal treatment before you go for absolutely everything.


----------



## berry55

agate-   thanks for that.  i'm still confused lol   Can u have LIT from DH done in the UK whilst having tx in another clinic? I'm totally fine with LIT from DH... i just wish we were not such a close match.

IYou all will b happy 2 know i just bought the Dr Beer book   so i can stop asking u all so much qns when i get it! lol xxx


----------



## agate

Berry - yes - in the UK the only place to get LIT is with Dr A at the Portland in London - he only does paternal LIT (not donor) - your DH would need to get some screening blood tests done (within 30 days of your LIT appt) and then have the LIT around the time that you start your Tx at your home clinic.  Dr A charges £1,150 (I think) but he is booked up a long time in advance (mainly because he has a shortage of lab techs). Dr A recommends only 1 dose of LIT

Alternatively you can have either DH LIT or donor LIT with Dr T in Athens (personally I think his method is better than the way that Dr A does it - because Dr A injects most of the white cells in your vein whereas Dr T injects just under the skin which seems to produce more of the necessary immune response - so if you do decide to have LIT - I think its worth going to Dr T rather than Dr A), but its only my opinion - there is lots of discussion about Dr T vs Dr A on other threads.  Dr T charges 500 euro for paternal LIT and 600 euro for donor LIT - it can be done in a day trip depending on the flights.  For paternal LIT your DH would need to get some screening tests done (but you will probably have done some of them already for your IVF).  Dr T recommends 2 doses of LIT done 4 weeks apart - so 2 trips to Athens.  If you are having DH LIT, you go to Dr T's clinic at 2.30pm and he has his blood taken and washed.  Then a couple of hours later they inject the white cells back into your arm.  Then you fly home.


----------



## Donkey

Evening girls - I've tried to quote...not sure if it's worked  

very difficult to say because you didn't make it as far as 12 weeks - Dr Beer would prob say that the fact you had this was evidence that you have a problem but other doctors would say that you haven't sustained a pregnancy long enough to make your LAD meaningful.  Dr Beer reckoned that if you had several early implantation failures (too early even for a pg test) it would have the same effect on your LAD as carrying a successful pregnancy but other doctors say that the effect on LAD isn't complete until 12 weeks of pg.  

I have never had a positive pregnancy test however I have a weak positive LAD.  Dr G said this is due to early implatation failures.

Makes you think doesn't it?
xxx


----------



## Donkey

It didn't work, I can't get the orange quote box    but I did manage to copy the relevant bit of the previous post  
xx


----------



## berry55

what is LAD? is this  the bit on my results that say  "flowcytometry - negative" ? xxx


----------



## deegirl

Just read the last few pages, phew...you girls know so much about this LIT thing for which I'm very glad!  

Berry - don't worry about things, best to wait to speak to Dr G, he may say that paternal LIT is ok.  I'm a partial match with my husband and he's recommended that.  However I am going to allow in my timescale time for donor LIT if necessary.  

Sarahh - I found your post on the tests required, thanks.  Same as what Cozy sent me so thanks to both of you.  Sarahh I see that you had paternal LIT first and it didn't work.  Did you have a partial match with your husband?  What were your levels in the first place?  How close to your EC are you arranging your last LIT?  It's just I'm planning a cycle for early July and thought maybe the first LIT should be early March.  

Lalaby - congrats on getting to 12 weeks!  You must be relaxing much more now. 

Cozy - all the best for 12th. 

Mag108 - I see you are going to Dr T on Tuesday.  Could I ask you a favour?  Would you be able to ask him if he will be doing LITs on Tuesday 5th April (Easter Tuesday).  I've worked out that he will be and I've also researched that only Easter Sunday and Monday are holidays in Greece but want to double check anyway.  I would be so grateful.  If he says that he won't be operating on that day could you ask if he will be doing it on the next Tuesday instead?  Many many thanks.  

Hi to everyone else.  

Dee x


----------



## berry55

deegirl - i think the problem for us is that DH is 4.1,4.1 so that is like a double match to me.... so it would b pointless to do LIT with DH.. i think... i hope i'm wrong. xxx


----------



## fi7

Hi all

just been to see Dr G, so looking for answers and found this thread.  he has advised i have the uterine biopsy - i think just to rule out issues there.  i do already have high cd19 and 5 but was ok on the tnf's.

has anyone had one of these, and if so what day do they do it, and can you try that month and just do an early pregnancy test or should you just abstain. I am running out of time!

thanks


----------



## sarahh

Deegirl - the paternal LIT did increase my numbers but only to the 40's and Dr g recommended I have a donor LIT before EC; however, cos Dr T only does every other Tuesday, the Tuesday I wanted in August so happened to fall in the holidays (a lot of the donors Dr T uses are students) and there were no donors available so I actually used the blood from another girl going out there for LIT using her DH's blood (confused?!!!) 

I had the 3rd LIT on about day 3 of stimms, the problem being that Dr G said to start Prednisolone on day 6 or so, Dr T does not like steroids being used after LIT for at least 2 wks.  So that may be why my results after the 3rd LIT still did not rise sufficiently.  

I had no match with DH. 

Regarding your timing, you need to have 2 lots of LIT 4 weeks apart then wait preferably 4 wks after 2nd LIT for re-test and possibly allow yourself enough time for a booster with a clear 2 wks before you may be due to start steroids.  March - early April would be good to start I reckon, give yourself 3 months to get it sorted. 

I'm hoping to go out next week for another booster before the next cycle otherwise its going to be too late again!  Still waiting to hear from Dr T though.....!! 

Fi7, sorry I can't help with your query - sure someone will be along soon who can though! 
Sarah x


----------



## agate

berry55 said:


> what is LAD? is this the bit on my results that say "flowcytometry - negative" ? xxx


LAD = leukocyte antibody detection - yes its starts with the bit about flowcytometry and then shows your IgG T and then B cells - the IgG B cells number is the most important one.


----------



## lalaby123

Fi7 yes som of us hav had this it's not pleasant but over soon dr g told me to do it couple of days before period due ie day 26/7 of a 28 day cycle it's best to do it in a non conception cycle 

Thanks girls re prednisolone advice dr g told me to wean off by reducing 1 tablet every 3 days i'm down to 3 tablets a day now can't wait to stop them next week hope it won't make my immune flare up had another repeat Nk test today to see when or if I need more ivig/intra I hav had 3 drips since positive pregnancy test hope I won't need them till late pregnxncy but hav a feeling I will due to presence of the lovely hematoma


----------



## Trueblood

Hi Girls

Can someone please ask Dr T, if it is still advisable to have LIT if I am using Donor Eggs from an unknown party.


----------



## Newday

I never had the LAD tests done because of having donor embryos. Dr G agreed that there was no point testing me agianst Dh or donor as we wouldn't know where the donor embryos would come from. Now I am wondering if I should of done
Dawn


----------



## Cozy

Trueblood,

if you are using DH's sperm then yes it is advisable to have LIT. Only if you are using a double donor would it not be recommended.

I had 2 lots of donor LIT and I used donor eggs with DH's sperm

Cozy


----------



## Cozy

Dawn,

if you are using a double donor - ie a frozen embryo then there is no point in testing, infact it would be impossible to acurately test as you dont know who the female and male donors are. If you were just using donor sperm and it was from a known donor who was willing to be tested then you could do the LAD test.

LIT is def recommended (if required) if you are using DH sperm with donor eggs, but not double donors

Cozy


----------



## itsmyturn

Cozy said:


> Dawn,
> 
> if you are using a double donor - ie a frozen embryo then there is no point in testing, infact it would be impossible to acurately test as you dont know who the female and male donors are. If you were just using donor sperm and it was from a known donor who was willing to be tested then you could do the LAD test.
> 
> LIT is def recommended (if required) if you are using DH sperm with donor eggs, but not double donors
> 
> Cozy


Hi Cozy, having read this, i must have misunderstood LIT, confused?! - given that;

-those with a partial match with dh/dp were previously advised to have donor lit (whose alpha nos. we aren't told by Dr T at treatment & that if its a mixed donor then theres a chance that out of the batch of alpha figs some will be ok)

-as a result of donor LIT,we have that strangers white cells in our system but we're not using that person's sperm, but then, don't need LIT for double donor (i may or may not be using dd)

- i thought LIT was to ensure our immues need to be reset to not attacking embroyos/sperm etc, and too similiar alpha numbers meant it was attacking, but by using donor, we famialirise immune to not attack................

I'm now confused about the purpose of DONOR LIT.


----------



## agate

The purpose of LIT is to reduce the attacking response of white cells in the uterus to embryo/fetal cells.

Embryo/fetal cells will always carry 1 DQa marker from the father (and 1 from the mother). 

The body's natural immune response is to attack any cells which are 'altered self' cells e.g., cancer cells/damaged cells.  If it cannot recognise fetal cells as not being 'altered self' cells, the theory is that the body will attack the implanting embryo/developing fetus.  

So the theory of LIT is to ensure that there is a population of B (antibody producing) cells in the body which are primed to recognise the father's DQa marker and ensure the fetal cells are recognised as something other than 'altered self' cells and are therefore protected - a blocking antibody response - rather than attacked. 

Paternal LIT does this directly by injecting cells with the father's DNA marker to stimulate the immune system to proliferate a population of B cells which are primed to recognise cells with the father's DQa number.   Most of the research on LIT was done on paternal LIT. 

However, sometimes (particularly if the father's DQa is a match for the mother's DQa), paternal LIT does not produce much increase in the LAD test (the test that is used to estimate how well B cells in the mother recognise white cells from the father).  In these cases, using a donor for LIT usually seems to produce an increase in the LAD, despite that the donor used usually doesn't have the same DQa as the father.    I don't know why this is, but whereas a lot of ladies choose to have paternal LIT initially, if that doesn't work they move on to donor LIT (and some ladies decide to start with donor rather than paternal), and if that still doesn't work, then they may try a different donor, or even have 'pooled donor' where the white cells from different donors are mixed.  Dr T and other doctors who do LIT believe that pooled MAY give a stronger response than single donor and donor MAY give a stronger response than paternal - but I don't think this has been studied scientifically, so it seems to be something they have gathered from trial and error/experience. 

I don't understand how your question relates to the quote from Cozy's post where she was talking about donor in the sense of donor egg/sperm (double donor in the sense of donor egg AND donor sperm) rather than donor of white cells for LIT but my understanding is that wherever the father is known, a LAD test can be performed using his blood, so the effectiveness of LIT can be tested, but if you don't know the father, you cannot get his blood for the LAD test.   So it makes sense to do LIT where someone is using donor eggs but not so much where someone is using donor sperm (unless the sperm donor is available to give his blood for the LAD test). 

I don't know if this makes anything clearer or not.


----------



## lalaby123

Girls, a friend of mine has just got her results from Dr G and her Tnf alpha is 35 so she has been advised Humira except she was supposed to start a cycle with Lister this week and doesn't want to delay it. Can those of you who had high tnf-alpha and chose not to do humira but try Ivig instead to bring them down can you tell me if it worked or not in reducing your tnf-alpha/TH1:TH2 ratio? 

Also londoners can you advise cheapest place to get Humira thanks

Just to add some confusion to the LIT subject, my friend has never been pregnant before but her test came back positive and high which has baffled Dr G who thinks maybe the lab mixed it up or that she had been pregnant without knowing but its unlikely due to poor husband sperm quality


----------



## Pinpin

Hi girls,

You are good with the chatting aren't you - that's great but sorry i can't keep up!  

Just going to try and contribute a little here

Cozy - I haven't had a chance to say yes but a big massive congratulations to you and your DH !!!   you must be over the moon. Good luck for the scan on 12th - it will be amazing, enjoy!

Lalaby - Congrats on making it to the 12 weeks hurdle   Re-weaning off I agree with the comments made previously that it's best to decrease very slowly. I am still weaning off myself and reducing by 1 tablet every 4 days and i'm now down to 15mg. When my gastroenterologist prescribes the pred for my UC he weans me off 1 tablet each week which is even more slowly so i think i will take my time reducing completely down to zero. I am having another drip on saturday (gonna be my 4th since BFP) not sure if it's going to be ivig or intralipid but i will go with whatever Dr G recommends. What are your levels doing?
Re-Humira I'm in London/Surrey and ordered mine from Fazeley pharmacy for £789 i think.

Berry - re-LIT if you decide to go for it I would recommend to cut to the chase and go to greece directly as you have a partial match. I was in the same position as you and had LIT with PA and it didn't work so had to rush to greece when we got BFP and I think Agate was in the same position also.

I can't remember who was asking but LAD definitely does not automatically turn positive when you get pregnant as mine got retested at 6 weeks pg and it was even lower than before (IgG B cells = 1 !!!) hence i went to greece.

Niccad - re-TNFa affecting egg quality yes it is written in Dr Beers book and also something I was worried about before the cycle as I had read that it takes a few months to get the rid of the TNFa exposed eggs before getting to the good quality ones but to actually it turned out to be fine and my TNFa were much higher than yours to begin with with a whopping 52 so don't worry i don't think egg quality is an issue for you as you have proven you and you DH can make some lovely embryos.

Hi to everyone else

Pinpin xx


----------



## Ourturn

Lalaby -Can't help re your question...I have taken it because I have high unk's and slightly raised tfn alphas
I ordered my humira yesterday and it arrived this morning. Cheapest place is with Heathcare at home...£745 (the nhs get it for £710) and I am pretty certain this is the cheapest we can get it I spoke to Jodie on 08003285323...they will ask if its for fertility, say yes.

Anna x


----------



## niccad

Lalaby - my TNFa was 38 originally. With LIT, IVIG, intralipids, prednisolone, gestone, clexane and aspirin it went down to 26. No idea which of the drugs bought it down but it came down without humira so I was really pleased.
x


----------



## itsmyturn

agate said:


> The purpose of LIT is to reduce the attacking response of white cells in the uterus to embryo/fetal cells.
> 
> Embryo/fetal cells will always carry 1 DQa marker from the father (and 1 from the mother).
> 
> The body's natural immune response is to attack any cells which are 'altered self' cells e.g., cancer cells/damaged cells. If it cannot recognise fetal cells as not being 'altered self' cells, the theory is that the body will attack the implanting embryo/developing fetus.
> 
> So the theory of LIT is to ensure that there is a population of B (antibody producing) cells in the body which are primed to recognise the father's DQa marker and ensure the fetal cells are recognised as something other than 'altered self' cells and are therefore protected - a blocking antibody response - rather than attacked.
> 
> Paternal LIT does this directly by injecting cells with the father's DNA marker to stimulate the immune system to proliferate a population of B cells which are primed to recognise cells with the father's DQa number. Most of the research on LIT was done on paternal LIT.
> 
> However, sometimes (particularly if the father's DQa is a match for the mother's DQa), paternal LIT does not produce much increase in the LAD test (the test that is used to estimate how well B cells in the mother recognise white cells from the father). In these cases, using a donor for LIT usually seems to produce an increase in the LAD, despite that the donor used usually doesn't have the same DQa as the father. I don't know why this is, but whereas a lot of ladies choose to have paternal LIT initially, if that doesn't work they move on to donor LIT (and some ladies decide to start with donor rather than paternal), and if that still doesn't work, then they may try a different donor, or even have 'pooled donor' where the white cells from different donors are mixed. Dr T and other doctors who do LIT believe that pooled MAY give a stronger response than single donor and donor MAY give a stronger response than paternal - but I don't think this has been studied scientifically, so it seems to be something they have gathered from trial and error/experience.
> 
> *Thats what i thought*
> 
> she was talking about donor in the sense of donor egg/sperm (double donor in the sense of donor egg AND donor sperm) rather than donor of white cells for LIT but my understanding is that wherever the father is known, a LAD test can be performed using his blood, so the effectiveness of LIT can be tested, but if you don't know the father, you cannot get his blood for the LAD test. So it makes sense to do LIT where someone is using donor eggs
> 
> *Yes i know the difference*
> 
> but not so much where someone is using donor sperm (unless the sperm donor is available to give his blood for the LAD test).
> 
> *So the point is,those who are DD,no point having LAD test since unknown DS,but if their DD ivf cycle fail,so DD ivf cycles trial&error, with no way of testing the DDs. Hmm this was a back up option.*
> 
> I don't know if this makes anything clearer or not.
> 
> *thanks for all your input, i cleared it in my head whilst responding to your reply, if that makes sense.*


 

One thing is for certain, i learn far more from ff, and things are explained more throughly, than in any of my expensive £££ consults thats for sure


----------



## itsmyturn

niccad said:


> Lalaby - my TNFa was 38 originally. With LIT, IVIG, intralipids, prednisolone, gestone, clexane and aspirin it went down to 26. No idea which of the drugs bought it down but it came down without humira so I was really pleased.
> x


hi niccad - my TNFa was 30.6 originally (on the dot, phew, Dr G says humira not needed, hopefully LIT, intralipids, prednisolone, gestone, clexane and aspirin will too bring it down.


----------



## Cozy

Agate, thanks for answering is it my turns query, I couldnt have done it better myself, though couldnt really see the relevance to the earlier post.

Lalaby, I got my Humira from HCAH, I think that was the cheapest when I was looking. I dont know how common it is but someone I know who had LIT with Dr T has found that her TNFa has also decreased quite a bit when she retested. She had one paternal LIT and 1 donor LIT.

Pinpin, thanks. How are you doing?

Cozy


----------



## Chicky Licky

Could anyone tell me when you take Humira please? I'm just waiting on my uterine biopsy results to come back and think I read somewhere that you have to take Humira (if you have uNK cells) about a week after the 1st LIT. Is that right?
Also, what should the result be if it's normal?
Just want to be prepared so it's not a mass panic as having first LIT on 12th!!! (Btw, my TNF was 25.8 but I think Dr G did the biopsy just to check things). 

I don't seem to get any reply to my emails from Dr G when I ask him things. Is anyone else the same? I got back my result for MTHFR the other day and I was Hetero Postive so worked out from Dr Beers book the combination of Folic Acid and B vits I needed. If I'd have waited on Dr G then it wouldn't be in my system long enough before our next cycle.  

I also asked him questions surrounding if I have to have an op to remove a polyp, so I could try and plan when I could cycle again. Again, no response! Cozy was a star though and came to my rescue with the answers! What would I do without you ladies heh!!! lol! 

I can't believe I've paid him loads of money recently and he can't even reply to an email! Sorry just needed to vent my frustration. I know he knows his stuff but does he really understand how hard it is when we're trying to plan flights and medication!!! Right then...vent over!!! 

Shellie
xx


----------



## lalaby123

thanks Niccad and cozy

Shellie yes he is not great at replying to emails....best to call him after 4.30 if you have an urgent question....


----------



## agate

ShellieG said:


> I can't believe I've paid him loads of money recently and he can't even reply to an email!


if you have questions for Dr G its probably best to book a follow up telecon with him? If it is urgent, his secretary will always try to squeeze you in asap.
Maybe its worth bearing in mind that if you are not cycling with him or having other Tx with him regularly, probably most of the money you have spent recentlh has gone straight to TDL/RFU for test costs rather than to Dr G's clinic, so its really only fair to expect to pay a consult fee to ask further questions?

Dr Beer's info on the humira protocol is here

http://health.groups.yahoo.com/group/immunologysupport/files/Humira%20and%20Enbrel%20information/

(you need to join the group to access the files - there are lots of helpful files here)

This post contains an unconfirmed link/information and readers are reminded that fertilityfriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## Pinpin

Cozy said:


> Pinpin, thanks. How are you doing?
> 
> Cozy


I'm good Cozy thank you - the 12th weeks scan i had 2 weeks ago went well and Down syndrome tests/nuchal scan have come back negative with a very low risk at 1 in 15000 which I am very very pleased with. My NK retest have been up and down but Dr G said my last NK retest wasn't too bad (NK 16.1 although CD3 a bit raised but not sure how much I will find out on saturday when i see Dr G for my next drip). I'm still feeling a bit sick daily but understand this should subside by 16 weeks. How are you feeling? Are you having any nausea yet?
I'm currently weaning off the prednisolone and have stopped the gestone since last week. When seeing Dr G on saturday I will ask him if he can do a scan at around 16 weeks to check on the baby and hopefully see pink or blue! 

Shellie - as per Lalaby's post i confirm Dr G is usually easier to get on the phone at the end of the day or very early on. I find that if I need to speak with him he always answers the phone if I call between 8.30 and 9.00am it's probably easier for him to answer questions on the phone than type an answer on email. Also if you have any questions to which you are not finding an answer to you can always contact Choice4 who used to post on Dr G's thread as she is very knowledgeable and has helped a MANY of us on so many points. She doesn't post on the thread any more but is excellent at answer PMs and always tells me to tell you girls not to hesitate to contact her so...

Agate - how are you doing?

Pinpin x


----------



## lalaby123

yes i agree with Agate that most of the money we pay Dr G goes towards the blood tests and or the drips so he doesn't earn much from those....so for me who I didn't cycle with him and am having most of my drips through HCAH I feel that £90 a consult is the least I can pay him for helping me get pregnant and looking after me throughout the pregnancy so I collect my questions and once i have enough questions I have a consult to get answers to all my questions but if you have one off questions or if you are unsure about something he has said and need clarifying then you shouldn't hesitate to call him to ask for clarification


----------



## Cozy

Shellie,

re when to take Humira. I had 2 different lots of info. One from Dr G and one from Dr T. I went with Dr T's advice in the end, which was to have the 1st Humira injection one week after the 1st LIT and the 2nd injection 2 weeks later. His explanation made more sense to meat the time, though I cant remember what he said to me about it.

Dr G wanted me to have Humira before LIT but I didnt have it in time and when I asked Dr T when I was there he said I should have it one week after LIT.

Have you spoken to Dr G about it yet? See what he has to say, then I guess its down to you to decide what to do.

Cozy


----------



## lalaby123

ladies does anyone know if the LAD test can be positive if you have been pregnant with a previous partner or does it check your results against your current partner only we are just trying to figure out how my friend got a positive result when she has never been pregnant and her husband sperm v low.....


----------



## Cozy

Pinpin,

glad things are going ok and the time is ticking along without any major issues. When did you do a NK retest? I'm not sure when I would need to do one. I will need to have another IVig or Intralipids after my scan next week and then not sure about after that, I need to speak to Dr G. Just thought I would get to my scan 1st before planning too far ahead.

I am having no nausea.. yet. I'm just having a bit of stomachache and headaches.

Take care

Cozy


----------



## Ourturn

Lalaby...no idea sorry

Shellie - Mr G told me to take humira asap but that is probably down to the fact I start stimming start of Feb. So I took 1st humira today, 1st LIT will be on Tuesday, then second humira will be on 20th Jan.


----------



## agate

lalaby123 said:


> ladies does anyone know if the LAD test can be positive if you have been pregnant with a previous partner or does it check your results against your current partner only


Logically, it must be possible for LAD to be positive if you have been pg with a previous partner, otherwise donor LIT couldn't work. According to Dr B its also possible to have a positive LAD if you have never known you are pregnant but have had several v early losses/failed implantations. Also do you think your friend might have had a blood transfusion previously? Just a thought.


----------



## lalaby123

Agate thanks for that...do they not test your blood against dh's blood though when doing the LAD or is it done independently of dh blood? is DH blood only taken for DQ alpha testing??


----------



## Chicky Licky

Lalaby - yes, DH's blood is needed to do a LAD retest. 

Cozy - thanks for your reply. Dr G hasn't said that I'll need Humira but, cos my TNF was on the high end of the scale but within the range, he wanted to do the uterine biopsy. I should have the test results back before I go for LIT so could always ask Dr T when I'm out there what he recommends if results show uNK cells. 

xx


----------



## Pinpin

Hi Cozy,

Dr G gave me an ivig on day of BFP and then another at 6 weeks scan and then I retested NK cells 10 days later and he gave me another ivig 3 weeks after the previous one and again retested 10 days later and then had intralipid 3 weeks after the last ivig and retested just before Xmas and Dr G said the next drip could wait until 09/01. I don't know if it would be the same for everyone or whether i got lots due to my negative LAD at retest at 6 weeks pg.

Good luck for the scan  

Pinpin x


----------



## lalaby123

Cozy - I too had one on BFP then one on heartbeat scan then retested and as my levels were still slightly above what should be I had another one straight away and then had to retest 10 days later ie yesterday and now waiting for results.....expect to have at least one drip a month until 24 weeks or so


----------



## berry55

berry55 said:


> DQ ALPA GENOTYPE
> 
> My Hubbys - 0501.0505
> Mine - 0104/0105.0505
> 
> TH1:TH2 intacellular cytokine ratios
> 
> TNF-a:IL-10 (CD3 +CD4+) 57.6
> IFN-g:IL-10 (CD3+CD4+) 17.2
> 
> IMMUNOLOGY
> 
> Quantiferon- TB GOLD TEST - NEGATIVE (Neg = <0.35)
> 
> NK ASSAY (% KILLED)
> Name Result
> 50:1 13.5
> 25:1 9.0
> 12.5:1 6.5
> IgG conc 12.5 50:1 6.5
> IgG conc 12.5 25:1 5.7
> IgG conc 6.25 50:1 4.6
> IgG conc 6.25 25:1 3.4
> % CD3 83.6
> %CD 19 4.8
> %CD 56 9.6
> % of CD19+ cells, CD5+ 35.4
> 
> **notes > 10% reduction in killing at each effector/target ratio.
> 
> LEUKOCYTE ANTIBODY DETECTION
> 
> Flowcytomerty NEGATIVE
> (T-Cells) IgM+ 2.8
> (T-Cells) IgG+ 2.6
> (B-Cells) IgM+ 28.6
> (B-Cells) IgG+ 23.3
> 
> NK ASSAY W/ INTRALIPID
> 
> 50:1 w/ Intralipid 1.5mg/ml	6.9
> 25:1 w/ Intralipid 1.5 mg/ml	3.8
> 
> HEEELLLLPPP MEEEE PLEASE!!!!!!!


Hi girls,

Had consultaion with Dr G today and my head is all over the place. I was hoping that some of u would b able to help me. (i have put my results above so u all can see again)

1st thing he told me is i will need gestone after EC. 2nd is that i need Humira but i ned 4 injections of this 2 weeks apart, so thats 8 weeks in total (is this right) He has advised me to have LIT with DH blood and to do it with Paul Armstrong. What do u all think about this, i must admit i felt really happy with this as u all know i was getting really upset about it all. He then said he was gonna send me a prescription out for the humira to start, and then he started mentioning bottles for blood to be sent by special delivary to him... i'm now confused about that. Can somebody tell me what i'm ment to do.... sorry!

Berry x


----------



## lalaby123

Berry that all sounds fine, gestone is for your high CD19/5, humira for your high tnf-alpha and because your level was quite high he has suggested 4 instead of 2 and yes 2 weeks apart makes it 8 weeks and then you have to retest your levels which is why he is sending you the blood form and tubes so that you can get the blood drawn at your GP rather than going to london and then send it to the lab. You should ask him closer to the time exactly when to do the retest as usually it has to be on a monday or a tuesday so that the lab has your blood by Wed to send to the US, good luck i am sure this will make a difference to your next cycle xxx


----------



## Zeka

ShellieG said:


> I got back my result for MTHFR the other day and I was Hetero Postive so worked out from Dr Beers book the combination of Folic Acid and B vits I needed.


Hi Shellie, 
I have the same and Dr G said I just need Clexane during tx (am currently taking 40mg during IUI cycle) - but no additional folic acid or B vits.
If he tells you otherwise please can you post it on here as I'd be really interested to see. Many thanks!

...So after having a LH surge 'smily face' on an OKP this morning Dr G booked me in for IUI tomorrow, however my bloods came back with a low LH this pm so now things are back up in the air again  Just want to catch that magic egg (and pray the two lots of intralipids have erradicated every other nasty known to mankind!)  

Love to all,
Zeka x


----------



## lalaby123

Zeka fingers crossed for your IUI tomorrow if it goes ahead....hopefully this will be your lucky one


----------



## Zeka

Thanks Lalaby - got a feeling it may be pushed back to Friday. Amazing really considering one of my follies looked like the size of a melon on the scan!


----------



## Chicky Licky

Hi Zeta - Dr G has told me I'll need to take Clexane but I think that was for my high CD3 levels. I didn't have my MTHFR test result then so can't have been for that. 
I've started taking extra folic acid and ordered some B vits anyway - can't harm in taking them I suppose. I will double check with Dr G when I see him last week in Jan and post on here if he tells me I don't need to take them. Good luck with your IUI!! 

Shellie
xx


----------



## berry55

Lalaby- thanks for the help   Do i start taking the humira when i want? and how do i get the prescription to health and homecare?? Thanks again xxxx


----------



## agate

Berry - you need to phone [email protected] first and make arrangements to send them the prescription (they will usually accept it by fax - especially given the weather conditions and potential effects on post).  when they receive it, they will phone you to arrange payment and fix a day for the courier to deliver it to you.


----------



## hanadiz

hello,
I am new here but used to be on argc thread and few others, so i hope u dont mind me joining
i met with Dr. gorgy and we are sorting when to start but am not sure yet may feb/march...

Zeka, crossing everything for you and this is your year  

to everyone else, i hope this year is the year to get BFP

hanadi


----------



## berry55

agate - thanks for the info. You know so so much  stuff!!!! I just feel like i have so many qns and they all seam 2 b flooding into my head when i'm not on the phone to Dr G..... why is that?? lol 

What do i do about The LIT tx with Dr Paul Armstrong? do I try 2 sort all that out myself now? or does Dr G sort that all out?? i have seen it is very hard to get an appointment with him.... ohh this is all so  much to do and think of, but i feel if i get all this done its gonna work. I just have this really strong feeling that this will be my time!

xxxxx


----------



## Zeka

Hi hanadi


----------



## agate

berry55 said:


> What do i do about The LIT tx with Dr Paul Armstrong? do I try 2 sort all that out myself now?


You can phone his secretary Paulette and arrange it with her - can't remember which days she works though - but if she doesn't answer you can leave a message and she will call you back. Make sure you get details of the blood tests and understand the time limits. contact details are here:

http://www.drpaularmstrong.co.uk/contact.htm

(I guess if it doesn't work with Dr A, your still so young that you have plenty of time to go to athens in the future)

This post contains an unconfirmed link/information and readers are reminded that fertilityfriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## alibee101

Hi

I'm starting to look into the immune issues and have an appt with my GP next week to look at the level 1 tests.

I've had one miscarriage many, many years ago, then two failed ivfs recently.  The last one was a chemical pregnacy.

I was wondering if anyone knows if anyone has sent off the level2  blood tests to Chicago themselves. I've heard that it possible and wondered what sort of cost it was.  

Many thanks
Ali


----------



## berry55

agate- so Dr G doesnt do anything with Dr Armstrong? Bloody heck,talk about leaving u to do things on ur own when u havent got a clue lol   I'm totally confused now.  how do i know when i would be doing LIT? is it 2 weeks after the last humria injection?? sorry for all the qns... just need to get my head around it all. xxx


----------



## lalaby123

welcome hanadi and Ali

Ali if you look on the first two threads (guide to immune testing) under the immunology section someone there has posted all the info about sending off the tests yourself...i think it does work out cheaper but obviously more hassle... you can also contact the RFU (the lab) directly http://www.rosalindfranklin.edu/dnn/chicagomedicalschool/home/CMS/Microbiology/CILab/tabid/1310/Default.aspx and liaise with them and get all the info

This post contains an unconfirmed link/information and readers are reminded that fertilityfriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## Han72

Hi and happy new year to all!

Just bookmarking... 

xxx


----------



## Peanuts

Hi Berry

Looks like you're results are similar to mine - have been recommended Gestone, Humira & LIT as well.  I need to get my finger out and speak to DrG to get moving with things again, have been going through a bit of ostrich syndrome!  Was planning to call DrG tomorrow, so will see if I can get any more info out of him then.

When are you thinking of cycling again?  Was thinking about Mar/Apr, but not sure if I've left it too late for LIt with DrA - anyone know when he's booked up to?

Been trying to catch up with everyone's news since comming back from holidays, getting there slowly!

BP - so sorry to hear about your BFP, sending you a big hug  , hope you're taking care of yourself and DH.

Cozy - congrats on your BFP, thats great news hun!  OVer the moon for your  

Take care and catch up soon
Dxx


----------



## berry55

Peanuts - hey! I know our results r really similar. I was so stressed out cos DH and I share 1 of the same DQ alpha matches, but Dr g said its not a problem so thats good. I am hoping to start tx about the same time as u Mar/apr. I need to get moving with this Dr Armstrong guy, i dont have a clue about how 2 go about it. I spoke to GCRM 2day and they told me that i am fine 2 cycle with March AF so thats gd. how can u book up with Dr A if u dont know the humira has worked... i'm so confused about it all.   Glad ur getting bk into it all again. This will be our time xxxxx


----------



## sarahh

Peanuts - I read somewhere the other day that PA is booked up till May?! 

Nix - just reading your signature again and had a thought - have you had LIT / had your LAD tested? 

Shellie (& someone else who was asking) - I am MTHFR hetero and Dr G said to me don't worry about high dose folic acid but after my last biochem I thought that it couldn't do any harm so got some from my GP.  May stop it and go back down to normal dose at start of next cycle.  

Zeka - good luck for your IUI  

Pinpin - tried to PM you the other day but your inbox was full - but can't remember what I was PM'ing you about now    Something I'd read somewhere!!!  

Choice - are you still lurking?  I hope everything is going really well for you.  I can't believe you & Cath left me standing behind - I'm coming to catch you up don't you believe it!!!   Any recommendations for me for the next cycle?! 

Right off to do a huge pile of ironing lucky 'ol me! 

Sarah x


----------



## berry55

sarahh- oh my god Dr Armstrong is booked up till may!!!!!!!!!!!!!!!!!!!!!! why would Dr Gorgy not tell me that?


----------



## Trueblood

Thanks for your views on LIT if using Donor Eggs


----------



## Chicky Licky

Hi Ali

Just saw your post about sending level 2 bloods yourself to the US.

I looked into this as wanted to cut the costs. Even had a fedex booked for the day I was seeing Dr G and had a bag full of bubblewrap, scissors, cellotape and all the fedex forms with me! (I was going to have blood taken at the walk-in centre round the corner called HCA after my appt with Dr G)

I cancelled it on the day though and had Dr G send the blood off. The only reason I did this was because Dr G said that he does the NK Assay tests with Intralipids and IVIg and this wouldn't be done if I sent my blood direct. 

Apparently he formulated this way of testing with RFU himself earlier in the year.  So basically, the blood would be tested for levels of NK cells then the 'remedy' (Intralipids and IVIg respectively) would be added to the blood and the tests done again to see how the levels were lowered. This then helps Dr G decide what treatment is best for you if your NK levels are above 15. 

I am planning send of bloods myself though when I get my LAD retested as it isn't so hard as you think when you look into it. 

Hope this helps!
Shellie
xx


----------



## itsmyturn

ShellieG said:


> I am planning send of bloods myself though when I get my LAD retested as it isn't so hard as you think when you look into it.
> 
> xx


Hi shellieG,

Would you share how you would go about this? Step by step instructions please? contact & get forms from RFU, but where to get blood drawn? into which colour tubes? where to get tubes from? Arrange for fedex to collect costs? If possible i'd like to avoid having to go into london to retest my LAD again,just for that in anycase.

I went via Dr G 1st time around,result came back with intralipids&IVIg,which was very promising i.e there was a solution/cure!

xxx


----------



## berry55

I'm so so confused about the whole getting an appointment for LIT with Paul armstrong. If sombody could walk me though what 2 do it would b so much appreciated. I dont understand how i have 2 make an appointment if i dont have the date 2 start the humira injections... is that stupid? I have to have 4 humira injetions... so what does that mean? I'm really sorry if i'm annoying you all cos i'm so thick, but i seriously would b lost without u all. This immune stuff as really mushed up my brain  

Thanks 

Berry xxxxxxxxxxx


----------



## agate

berry55 said:


> I'm so so confused about the whole getting an appointment for LIT with Paul armstrong. If sombody could walk me though what 2 do it would b so much appreciated. I dont understand how i have 2 make an appointment if i dont have the date 2 start the humira injections... is that stupid? I have to have 4 humira injetions... so what does that mean? I'm really sorry if i'm annoying you all cos i'm so thick, but i seriously would b lost without u all. This immune stuff as really mushed up my brain
> 
> Thanks
> 
> Berry xxxxxxxxxxx


Dr A's availability to do your LIT may be the deciding factor - as you might have to fit everything else around when he can fit you in for the LIT and work backwards to fit in your 4 humira shots.

You can either phone Dr G and ask him what to do and whether he can speak to Paulette for you and coordinate your timings - or phone Paulette (Dr A's secretary - I gave you her contact details on an earlier post) and find out when you could have LIT with PA. If the intention is for you to have 4 humira shots, 2 weeks apart and then retest before you start Tx, then presumably you would aim to have your LIT around the time you start the Tx, but you might be able to have it in between the last 2 shots if you were squeezed for time.


----------



## berry55

agate- i sent u a PM xx


----------



## Chicky Licky

Its my turn -

You need to find somewhere local to you who can draw blood and provide tubes - I'm going to go to my GP's. There may be a cost for this.

Go to the RFU site and download the "Requistion Form' by clicking "Specialty Laboratory Tests" on this link
http://www.rosalindfranklin.edu/DNN/home/CMS/Microbiology/CILab/CITests/tabid/1311/Default.aspx
Fill it in. (I'm putting Dr G down for my results to go back to).

Email/ring RFU and ask what bottles and how many - I'm not sure as not done that bit yet. 
Contact details for RFU are found on this link:
http://www.rosalindfranklin.edu/dnn/chicagomedicalschool/home/CMS/Microbiology/CILab/tabid/1310/Default.aspx

Ring Fedex and ask them to email forms and explain what you need to fill in and where. The contact I have is Jo Murphy - DL **** - she was brilliant. (I originally rang the main fedex no. and got someone that told me wrong!) You can book a fedex courier with her. Ask for the courier to bring box to put shipment in - a "Clinical Pack" is best if they have one.

Extract below is from the "Guide to immune testing" thread re Packing: 
We sellotaped the tubes to sheet of bubble wrap, folded over sheet then rolled up the sheet, creating a cylindrical bundle of test tubes and bubble wrap. We had about 20 tubes in total, so we had to make several bundles so as not to end up with one huge bundle, which wouldn't have fitted in the shallow medium sized box. We covered each bundle with some paper towels so as to absorb any spillages in case of any breakage. Fedex don't want your blood on other cutomers packages. Then we put all the bundles and the biopsy bottle into the clinical pack ( a sealable plastic bag) along with the appropriate paperwork for AB lab. This was then put into a medium box ( like a slightly deeper pizza box)

Send off on a Mon/Tue - don't refridgerate the blood!

Hope this helps!
Shellie
xx

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----------



## berry55

is there a website for the LIT clinic in Athens? xxx


----------



## agate

ShellieG said:


> Its my turn -
> 
> You need to find somewhere local to you who can draw blood and provide tubes - I'm going to go to my GP's. There may be a cost for this.
> 
> Go to the RFU site and download the "Requistion Form' by clicking "Specialty Laboratory Tests" on this link
> http://www.rosalindfranklin.edu/DNN/home/CMS/Microbiology/CILab/CITests/tabid/1311/Default.aspx
> Fill it in. (I'm putting Dr G down for my results to go back to).
> 
> Email/ring RFU and ask what bottles and how many - I'm not sure as not done that bit yet.
> Contact details for RFU are found on this link:
> http://www.rosalindfranklin.edu/dnn/chicagomedicalschool/home/CMS/Microbiology/CILab/tabid/1310/Default.aspx
> 
> Ring Fedex and ask them to email forms and explain what you need to fill in and where. The contact I have is Jo Murphy - DL - she was brilliant. (I originally rang the main fedex no. and got someone that told me wrong!) You can book a fedex courier with her. Ask for the courier to bring box to put shipment in - a "Clinical Pack" is best if they have one.


Shellie - do you know if its actually any cheaper to do this than doing it through Dr G (but getting the blood drawn locally using a tube pack from TDL and posting the tubes back to TDL for onward fedex to chicago)? E.g., the LAD done that way is £200 and the NK restest is £310.

Thanks


----------



## agate

berry55 said:


> is there a website for the LIT clinic in Athens? xxx


The website is http://www.infertility.gr/ but you need to use google live translate or something similar to translate it from greek to english

(go to the google home page, click on 'more' at the top and choose 'translate', then you can paste the website's address into the box and get a translated version. Where the original page is too long though, the translater will stop part way through the page, so you might have to copy and paste the last part of the page and translate it separately - from memory the stuff about LIT was too far down the page to get translated without doing this.)

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----------



## Newday

I sent bloods off myself
Dawn


----------



## berry55

does studio semprini in milan offer LIT


----------



## Chicky Licky

Hi Agate - my understanding is that you can't have blood drawn at TDL without a referral from Dr G or someone else. So if TDL send you the bottle pack you will still be paying Dr G's prices. I paid £200 last time for LAD via Dr G and having blood drawn at TDL.

If however you have blood drawn at the walk in centre called HCA round the corner (111 Harley St), you just pay the blood withdrawal fee there, then can post off yourself. Forgot to say earlier that you put your credit card details on the RFU form so you pay them direct.

I don't know what RFU charge to go direct as I've not got that far to ask them yet. I think Dr G does put a cut on top of his costs though. 

I'm going to do it this next time though just to save a trip down to London and hopefully some money on the test itself! 

Shellie
xx


----------



## itsmyturn

ShellieG said:


> Its my turn -
> 
> You need to find somewhere local to you who can draw blood and provide tubes - I'm going to go to my GP's. There may be a cost for this.
> 
> *Afraid to go to my gp, big hassle, got a link for phelm services,so will enquire,i know there's a small charge for this.*
> 
> Go to the RFU site and download the "Requistion Form' by clicking "Specialty Laboratory Tests" on this link
> http://www.rosalindfranklin.edu/DNN/home/CMS/Microbiology/CILab/CITests/tabid/1311/Default.aspx
> Fill it in. (I'm putting Dr G down for my results to go back to).
> 
> *Already done, found link from agate in test link*
> 
> Email/ring RFU and ask what bottles and how many - I'm not sure as not done that bit yet.
> Contact details for RFU are found on this link:
> http://www.rosalindfranklin.edu/dnn/chicagomedicalschool/home/CMS/Microbiology/CILab/tabid/1310/Default.aspx
> 
> *yet to do, something about specific colour bottles, have not found which colour for the LAD*
> 
> Ring Fedex and ask them to email forms and explain what you need to fill in and where. The contact I have is Jo Murphy - DL - she was brilliant. (I originally rang the main fedex no. and got someone that told me wrong!) You can book a fedex courier with her. Ask for the courier to bring box to put shipment in - a "Clinical Pack" is best if they have one.
> 
> *will do,hope its not expensive nor a big hassle,want all this done discreetly,hate big ordeals.*
> 
> Extract below is from the "Guide to immune testing" thread re Packing:
> We sellotaped the tubes to sheet of bubble wrap, folded over sheet then rolled up the sheet, creating a cylindrical bundle of test tubes and bubble wrap. We had about 20 tubes in total, so we had to make several bundles so as not to end up with one huge bundle, which wouldn't have fitted in the shallow medium sized box. We covered each bundle with some paper towels so as to absorb any spillages in case of any breakage. Fedex don't want your blood on other cutomers packages. Then we put all the bundles and the biopsy bottle into the clinical pack ( a sealable plastic bag) along with the appropriate paperwork for AB lab. This was then put into a medium box ( like a slightly deeper pizza box)
> 
> *ok*
> 
> Send off on a Mon/Tue - don't refridgerate the blood!
> 
> *just saw the guidelines on this*
> 
> Hope this helps!
> Shellie
> xx
> 
> *Excellent help,thx hun*


----------



## Ourturn

Hi everyone
Had my 1st humira shot yesterday. have had a banging head ache for the past 2 hours and feel sick. Is this a normal reaction to humira?
Thanks 
Anna x


----------



## itsmyturn

agate said:


> Shellie - do you know if its actually any cheaper to do this than doing it through Dr G (but getting the blood drawn locally using a tube pack from TDL and posting the tubes back to TDL for onward fedex to chicago)? E.g., the LAD done that way is £200 and the NK restest is £310.
> 
> Thanks


I did read, sometime ago, someone was going to DIY the Lad test, then found it a big hassle & worked out about the same via Dr G, ended up going via Dr G instead, so that put me off.... but if you DIY you can add tests that you want done which Dr G might not want you to do.....i don't know which way is gonna work out cheaper & less hassle free...

Dr G gets sent the results first either way? Can i just get a copy of the results, without another consult?


----------



## agate

itsmyturn said:


> If you phone Akbil (Dr G's secretary) once you think the results are back, she is usually happy to fax you a copy.
> 
> 
> 
> itsmyturn said:
> 
> 
> 
> have not found which colour for the LAD
> 
> 
> 
> The test instructions for LAD are here:http://rosalindfranklin.edu/DNN/Portals/24/documents/microbiology/ClinicalImmunology/Immune_Function_Assays/Leukocyte_Antibody_Detection_Crossmatch.pdf
Click to expand...


----------



## Chicky Licky

Dr G is the less hassle way!


----------



## Louiseb26

Hi Anna

I'm waiting for mine to be delivered.How comes you have taken yours all ready? Was it easy to take?

Lou xx


----------



## Louiseb26

Hi Shellie

Sorry was posting same time.I really hope this weather sorts its self out before next Tuesday.They say its going to last another week...and knowing my luck it will.

Lou xx


----------



## agate

ShellieG said:


> Its my turn -
> 
> You need to find somewhere local to you who can draw blood and provide tubes - I'm going to go to my GP's. There may be a cost for this.


If you want, you can still go via Dr G and get the blood drawn locally. You get the form faxed/posted to you by Dr G (and you pay him over the phone), you ring TDL and ask them to send you a postal pack with the tubes in it. Then you get the blood drawn locally and posted back to TDL on a monday so they have the tubes on a tuesday morning to fedex to chicago. I would be really interested to know if its actually any cheaper to go direct - I kind of guess it isn't by the time you've paid for the fedex on top of the RFU charges- but it probably depends on how far you live from the major cities where fedex collection is cheaper. I did compare Dr G's prices for (non-chicago) blood tests to TDL's own prices - Dr G does add a small mark up per test, but then if you have to pay for a blood draw fee it ended up being cheaper to go through Dr G unless you needed lots of tests done at once. From this, I'm sort of guessing that his mark up on the chicago tests is not that big?


----------



## Chicky Licky

Not sure Agate but I'll check into it after I've had my LIT. You're probably right. 

Lou - yeh, I really hope the weather isn't that bad for us next Mon/Tues - at least I have a front wheel drive, even if it is an old banger!!! lol! We'll be fine hun!!! xx


----------



## itsmyturn

Thx Agate & shellie for your responses&links....glad we thrashed out the possibilities ...probably no huge saving but alot of hassel...


----------



## Chicky Licky

Yeh, you're probably right there!!!! lol! It was easy just doing it with Dr G!


----------



## berry55

if i go 2 athens for LIT will the humira be effected?? or would it be taken b4 LIT again?


----------



## Chicky Licky

Berry - you'll need to ask Dr G when to take Humira. xx


----------



## berry55

shellie- ok. I know he has sent my prescription up already so i guess i'm just waiting on the LIT apart  now. I wish DH would finnish early! lol xxx


----------



## agate

berry55 said:


> if i go 2 athens for LIT will the humira be effected?? or would it be taken b4 LIT again?


Can you pm Cozy, Pinpin, Bankie or Blonde1 and ask them? I think they all did humira with LIT so they would know the advice they were given on timings.


----------



## ells

Hi Ladies,

my you have been busy!!!  Its taken me over an hour to catch up.  Welcome to all the newbies, you have found a great thread here, the ladies really know their stuff!!

Lalaby - 12 weeks fantastic.  Did they say if the haematoma is reducing?

Pinpin, great news for you too hun.  How are you feeling?  Starting to relax into it yet?

Cozy, how are you doing?  I bet the time for your scan cant come fast enough!!

Deegirl, how are you doing?  Have you sorted out your LIT yet?

Mags, how are you hunni?

Niccard, hope you are okay.

Nix how are things?

SarahH hi hunni, how are you?  Looks like you are ready to rock and roll again hun.  Hope you get everything sorted out!

BP hello hunni hope you are okay.

Hi Agate, how are you feeling sweetie?

Does any know how omni and choice are getting on?  Cath, hope the bump is coming along nicely, how are you feeling?

Hi to everyone else.  Hope you are all well.

Quick update from me, having my first humira injection on Monday.  As I having it for my Chrones, the nurses are doing all of my injections, I have been authorised to have 3 injections.  I have let Dr G know and he has asked me to come in 2 weeks after the last injection to get my levels rechecked.    that this will do the trick and things will stay settled.  On TX front we are just waiting to get out set up appointment through from the clinic which will hopefully be in the next couple of days.  

On the LIT front, we are going to be having our LIT with PA.  I phoned up a week before Christmas and spoke to Paulette who said she would ring me last week but havent heard anything so rang her this morning.  We have asked to be booked in for the second week of March she told me that she is unable to book more than a month ahead.  She has us on her list to book in.  She did say that she would be booking us in in February and not to worry as we wouldnt be left off.  She aslo said that April is almost full!

Ells


----------



## Zeka

Hello ladies, just re the humira headaches, try drinking a couple of litres of fluid during the day and this should help sort it out. 

Just out of curiosity, does anyone know what nationality Dr G is?

Thanks ladies for good wishes for tomorrow's iui! I'm fully triggered and ready to pop a couple of eggs on demand!
Zeka x


----------



## Chicky Licky

Dr G's egyptian I think!!


----------



## niccad

Zeka - good luck tomorrow   

I've got my first follie scan in the morning... really really hoping I have a good batch. Last time I ended up with 7 eggs (which I was happy with but they said was low) so am on far higher menophur this time (AMH is only 6  ) . Please please please let there by loads of follies...


----------



## Newday

Good luck Niccad Can I ask since failed cycle how many af's have you had?
Dawn


----------



## niccad

Hi Dawn - natural FET was nov/dec. I got the BFN AF and then another one before starting a fresh cycle. Wanted to start ASAP whilst the LIT is still in my system (and hopefully some of the IVIG and intralipids benefits). If it had been medicated FET or a fresh cycle I would've waiting a few months to give my body a chance to recover.... Do you think I've started too quickly?
Nic


----------



## agate

no- don't think you've started too early at all. 
tomorrow for scan you will only be on day 6 of stimms?  Is very early?  So even if not so many follicles it will be too early to tell v much?  I had a scan w Dr G on day 5 of stimms and was really panicked cos he said there was too little action - everything had changed loads by the time I came to EC - had 14 eggs retrieved even though I didn't up the dose as much as Dr G said was required - so whatever happens, don't put too much store in early scans.


----------



## Newday

Niccad no not at all it's just I can't work out when my af is due. I had a bleed after BFN and can't for the life of me remember if I've had another one LOL
Dawn


----------



## niccad

Dawn - If I remember right you had yours a similar time to my BFN bleed ... My next AF only came last saturday so yours is probably due around now. I'm sure you would've remembered if it was in the last week or so....


----------



## Newday

yes thats why I was interested in you starting txc again!
dawn


----------



## deegirl

Ells - Hi!  You are great at rembering everybody lol!!    Glad to hear that the 'ball is rolling' for you and that you've got your LIT arranged.  Good for you.  I haven't got mine organised yet but thinking of 1st one in March and 2nd early April but Shellie is kindly going to ask Dr T on Tuesday if he will be doing LITs on Easter Tuesday for me.  Then I can decide on my dates and start pestering Dr T to book me in!  That should be fun.  

Agate - You've taught me something regarding the translate facility on google!  I just tried it and looked at website for Athens...interesting.  Thanks.  

Sobroody - Hope that headache clears  

All the best to all the girls who are going to Athens on Tuesday, hope you've time to have fun!!

Dee x


----------



## deegirl

Girls - anyone know how long the effects of humaira last for?

Ta xx


----------



## itsmyturn

Can someone who was prescribed gestone by Dr G, help me to decipher his hand written prescription, can't make out what he wants me to do with it...stab him in the neck with it?

"...Gestone inj 100mg *dcup(?)/M(?)/day * after ovulation til the period "

take it ?, every morning? per day...

Any intelligent guesses will the pharmacy know what to make of it? Honestly dr's and their sqiggles...   

Just can't make out those bolded bits of his prescription...he probably can't remember either,since i don't recall him keeping a copy...sign

Yes i've asked,no he has not replied, don't want to be stiffed another £90

I did ask him to repeat at the time,but he was busy shoving us out the door/answering his ringing phone.


----------



## agate

itsmyturn said:


> Can someone who was prescribed gestone by Dr G, help me to decipher his hand written prescription, can't make out what he wants me to do with it...stab him in the neck with it?
> 
> "...Gestone inj 100mg *dcup(?)/M(?)/day * after ovulation til the period "


R Gestone injection 100mg deep IM/day after ovulation til the period

which means you inject 100mg gestone *deep* *intramuscular* (upper left quadrant of your buttock - alternating right and left side each day) from the day after ovulation til you get your period (or if you get pg you continue until 12 weeks ish) - if you get a confirmed 6 weeks-ish scan your GP will hopefully give you a maternity prescription exemption and then you can start getting your gestone on the NHS for free (along with any other meds you are on at that point).

its worth shopping around for the gestone cos the price varies a lot and its sometimes hard to get the 100mg which means buying 2 x 50mg - there were some threads about where was doing 2 x 50mg the cheapest about a month ago - I think. I found Ali's in Shadwell was pretty cheap but there may be some places that are cheaper? When you buy it make sure you get your needles and syringes at the same time - you need 2 big green intramuscular needles and a 2 ml syringe for each day and an antiseptic wipe/swab (or you can use one 1 smaller needle for drawing up and one big needle for jabbing - but you do need a second clean needle for jabbing either way. You also need to buy a packet of cotton wool pads.

Its much easier if you can get your DH or someone to do your gestone jabs for you cos its hard to see what you are doing. If you do a search on this site for kara's jabbing vids - she has some videos on how to do the gestone jab yourself.

Key bits are - must be in the upper left quadrant of buttock (otherwise you can jab a nerve or a blood vessel) - make sure you find a picture on the net of where this is
- warm the vial of gestone for 2 mins in your bra before you open it - to redissolve any flaky bits and so it doesn't sting
- must use the right length of needle (21g 1.5 inch - green)
- if you can get hold of ampoule snappers (little soft plastic tubes) you can use them to protect your fingers when you snap open the vial - otherwise you need to use something like a blob of cotton wool to protect your fingers when you snap
-swab with antiseptic first
-stretch the sking tight before you jab
- must jab it in leaving only 1cm of needle showing
- must gently pull back on plunger before injecting to make sure no blood is sucked up which would mean you have hit a vessel and are in the wrong place (throw away the needle but you can reuse the syringe and drugs) - this almost never ever happens 
- press down firmly to inject (cos gestone is thick and oily and its hard to squeeze in)
- give a good rub of the area after the jab using a clean cotton wool pad (to mop any spots of blood and to stop your bum getting lumpy - it helps the gestone get absorbed)
- try to do your jabs at (almost) the same time every day because progesterone has a short half life so you don't want an extended gap between jabs - it doesn't matter what time of day you choose to do your jab just as long as you pick a time you can stick to (one hour either side of the day before doesn't matter)

BTW it really doesn't hurt as much as you think it will and after a couple of days it will feel really routine - just occasionally it hurts a bit more than other times if you have to get through a tough bit of skin - ask whoever is doing it just to keep going even if you squeal cos it suddenly gets easier once the needle is in - most days it really doesn't hurt.

If you are really confused and can't find enough instructions/videos on the net - maybe one of the nurses at your GP surgery will do the first one for you so you/your DH/helper can get a tutorial?


----------



## agate

deegirl said:


> Girls - anyone know how long the effects of humaira last for?
> 
> Ta xx


There is a discussion about it on this on another thread
http://www.fertilityfriends.co.uk/forum/index.php?topic=173020.msg3354443#msg3354443


----------



## itsmyturn

Thx Agate, just wanna hug u ,u are amazing & generous.

i don't mind researching, but i can't read his mind...or his handwriting...and all i get are cryptic one liners of him.... i know i know he's busy...

also got stuck on *"clexane sc/day(?)"* but finally googled it to mean subcutaneous *(sc)* and researched that and found answers....phew

xxx


----------



## agate

yes - that's right - clexane goes in your belly flab.
it almost always comes in pre-filled syringes with the needle already attached
you need to keep away 2 finger widths from your belly button
pinch a wodge of flab
wipe with antiseptic swab
put needle in anywhere between 90 and 45 deg (45 deg if you haven't got much flab though - the tip of the needle needs to end up in flab - not muscle)
keep flab gently pinched - do not let go
inject as slowly as you need so it doesn't sting too much
if its a fancy syringe with a white plastic mushroom head - you need to keep pushing until it clicks twice and the plastic sleeve jumps out to cover the needle - (I found I was too feeble to do the fancy syringe myself - I couldn't press hard enough with one hand (the other hand has to hold the flab) so even if I got almost all the injection done, DH had to do the last bit for me - but I am v feeble.  the skinny simple syringe is less fiddly - just push til it stops
pull out slowly and wipe with antiseptic wipe
DO NOT RUB afterwards and DO NOT LET GO OF FLAB until you are finished
try to find a new unbruised site to use every day and try to avoid getting bruises by injecting slowly and not rubbing even if it stings.

Obviously you need a sharps bin too if you haven't got one.


----------



## MissyMinx

Hi Ladies,

Agate - thanks so much for your fab information regading my results, you're a mine of information!!!!    

I've got my first LIT tx booked with Dr T in March, and then we're on our way    I think it's really interesting that I may respond better to stimms with immune tx, I've been marked as a Poor Responder by my old clinic - who don't believe at all in immune issues, so I've got everything crossed that we might perhaps get a few more eggs this next time   .

Like Berry, I've got to figure out whether I'm to take my first dose of Humira prior to LIT or after it now, Dr G thought I'd need 4 lots of Humira so I think he said to take the first injection prior to LIT, but my DH thinks he said it was after the LIT.  I'll have to give him a call and see what he says.

Zeka, sending you  

Niccad, best of luck for your scan.

Sending all you ladies   and  ,

Love,

Em. x


----------



## itsmyturn

agate said:


> yes - that's right - clexane goes in your belly flab.
> it almost always comes in pre-filled syringes with the needle already attached
> you need to keep away 2 finger widths from your belly button
> pinch a wodge of flab
> wipe with antiseptic swab
> put needle in anywhere between 90 and 45 deg (45 deg if you haven't got much flab though - the tip of the needle needs to end up in flab - not muscle)
> keep flab gently pinched - do not let go
> inject as slowly as you need so it doesn't sting too much
> if its a fancy syringe with a white plastic mushroom head - you need to keep pushing until it clicks twice and the plastic sleeve jumps out to cover the needle - (I found I was too feeble to do the fancy syringe myself - I couldn't press hard enough with one hand (the other hand has to hold the flab) so even if I got almost all the injection done, DH had to do the last bit for me - but I am v feeble. the skinny simple syringe is less fiddly - just push til it stops
> pull out slowly and wipe with antiseptic wipe
> DO NOT RUB afterwards and DO NOT LET GO OF FLAB until you are finished
> try to find a new unbruised site to use every day and try to avoid getting bruises by injecting slowly and not rubbing even if it stings.
> 
> Obviously you need a sharps bin too if you haven't got one.


Thx agate  for staying up to type that, i had to sleep(slept poorly though),had a 8.40am appt with gp to get karotype test on nhs (the only outstanding test of my level 1 test to do) - more heated ££ arguments - she's gonna call me back after she's had a word with the "higher's". If i don't get it on the nhs, it might be back to Dr G...am gonna resist the urge to throw an organiser & etiquette book at him...

The needles are really gonna be a test for me BIG TIME....petrified of them yikes(i usually turn away if i'm being needled & take deep breaths)...its also gonna test our relationship cos he's not great at being doc and at the first sign of pain...am gonna kick him away...pure reflex....and i didn't think to ask if there's any non-needle/injection medication alternatiove...and as usual Dr G didn't offer any....grrrhh

gestone - gonna time it for just before bed time... can sleep on it afterwards right? i can only sleep on my back...stinging? I'm not much of a side/front sleeper.

nightly fights before we sleep... sign

xxx for all your considerate advise to us all


----------



## agate

There isn't a no-needle alternative to clexane unfortunately. 

The only no-needle alternative to gestone is cyclogest pessaries (vaginally or rectally) but the reason that Dr G prefers high dose gestone (50mg is a basic dose, 100mg is a higher dose) is that it is usually better absorbed.  If you really want to avoid the gestone you could talk to Dr G about using pessaries (they are quite a bit cheaper than gestone too).

If you hit a tender bit of butt, the gestone shot does hurt a little, but only as the needle goes through the skin.  It stops after you've finished the shot and given it a rub.  It won't stop you sleeping - you are going to have to learn to sleep on your side when you are pg anyway!! 

My DH was v unhappy about giving me shots but the nurse gave him a lot of confidence and he is expert now.  He knows to give the shot whatever the squealing and the gestone hurts less if you throw it in quickly like a dart rather than more slowly.

The clexane can sting for a bit after the shot, but I don't think it would keep you awake.

I was very frightened the first time I had to do jabs but I'm on my 5th sharps bucket now so I must be pretty blase by now.

I think its still not common for the NHS to pay for karyotyping tests because of their cost (unless you are having formal investigations for recurrent miscarriage).


----------



## milliemorley

Hi Girls

I'm sorry to highjack this thread ... but I've just found it(by chance) and I was wondering if anyone could reassure me because I feel so desperate ...    **sorry** You ladies seem so knowledge so I'm hopeful one of you can help me .. thank you xxxx

Please can I give you some background information about us. My husband and I have been TTC for 5 years. In that time we have had 2 natural pregnancies, both ending in miscarriage at 6 weeks, one round of ICIS which gave us a + result but I miscarried and one failed round of ICIS where I tried to go to blastocyst and my 8 embryos didn't make it. We have been diagnosed with severe male infertility. DH has lazy swimmers, a low(ish) count, poor forms and 98% anti sperm antibodies. So he's got the full house of issues, poor thing.

We decided to move to the ARGC and after chicago immune testing I've just been diagnosed with high CD19/CD5 cells. I was told the normal range is 10-15% .. mine was 55%!! <<eek>> This is what is stressing me out!! I can't find anyone with a reading that high and I'm thinking ... am I wasting my time?!

I've had a little read around about CD19/CD5 cells and I understand that they are closely associated with Anitsperm Antibodies (ASA's), my husband has 98% ASA's which is why we've had to have ICSI and will have to have it again. I wonder whether having unprotected sex for the last 5 years has had an affect on me? I don't know how I managed to get high ASA's as well? Maybe its just bad luck .. who knows? I've also read that a high reading can cause POF but so far in both my cycles I have produced very good numbers on a low level of menopur (150mg) and was told my egg quality was good (although I'm beginning to doubt that given that I didn't get to blastie until day 6 on my last cycle)

I was told that my CD19/CD5 issue could be overcome with IVIg, I asked if I needed any other treatment like steroids or clexane but they said no. I'm currently at the ARGC in London. I've read that some of you have the same and following IVIg your levels have dropped. I read one lady had a reading of 25 and it dropped to 11. I'm thinking .. I'm gonna need A LOT of IVig to get my levels down .. am I right?

My reason for this topic is to ask if anyone else out there has been diagnosed with the same condition? ... I would love to hear some positive stories of ladies having given birth after having high CD19/CD5 cells and having IVIg ...

Sorry for the desperate tone of my email .. I feel so scared and lost and full of fear. Thank you for reading

Millie xxxxxxxxx


----------



## itsmyturn

agate said:


> There isn't a no-needle alternative to clexane unfortunately.
> 
> The only no-needle alternative to gestone is cyclogest pessaries (vaginally or rectally) but the reason that Dr G prefers high dose gestone (50mg is a basic dose, 100mg is a higher dose) is that it is usually better absorbed. If you really want to avoid the gestone you could talk to Dr G about using pessaries (they are quite a bit cheaper than gestone too).
> 
> If you hit a tender bit of butt, the gestone shot does hurt a little, but only as the needle goes through the skin. It stops after you've finished the shot and given it a rub. It won't stop you sleeping - you are going to have to learn to sleep on your side when you are pg anyway!!
> 
> My DH was v unhappy about giving me shots but the nurse gave him a lot of confidence and he is expert now. He knows to give the shot whatever the squealing and the gestone hurts less if you throw it in quickly like a dart rather than more slowly.
> 
> The clexane can sting for a bit after the shot, but I don't think it would keep you awake.
> 
> I was very frightened the first time I had to do jabs but I'm on my 5th sharps bucket now so I must be pretty blase by now.
> 
> I think its still not common for the NHS to pay for karyotyping tests because of their cost (unless you are having formal investigations for recurrent miscarriage).


pessaries (vaginally or rectally)

*not a great option either...sqeamish also..what ever happen to simple pill-popping ?? I really am gonna have to suffer for a great cause.*

you are going to have to learn to sleep on your side when you are pg anyway!!

*never thought of that...*

My DH was v unhappy

*He & i are unhappy about this,cos niether of us has confidence in him...*

throw it in quickly like a dart

*he's an all rounder sporty type..that could work...*

I was very frightened the first time I had to do jabs but I'm on my 5th sharps bucket now so I must be pretty blase by now.

*Thats where i'm at....a big mental test then*

not common for the NHS to pay for karyotyping tests

*yes, we had to angle the reason to inhereditary/carrier gene thing and passing it on to the little one...still waiting shes busy compiling a list of why no and i'm doing the yes list*

*xxx a miraculous conception would be perfect for me right now*


----------



## ells

Hi Millie,  didnt want to read and run.  I am sorry i cant help answer your question but I am sure someone will be along shortly to reassure you.      I am sure that the IVIg will help though hun.  My CD 19 and CD 5 were also high - as well as several other issues and we will be doing IVIg amongst the other treatment in the immune therapy box of tricks.  Good luck.

Hi to everyone else.

Ells


----------



## agate

itsmyturn said:


> agate said:
> 
> 
> 
> pessaries (vaginally or rectally)
> 
> *not a great option either...sqeamish also..what ever happen to simple pill-popping ?? I really am gonna have to suffer for a great cause.*
Click to expand...

honestly, pessaries are abs no big deal - they are bullet shaped tablets about 2cm long and are made of cocoa butter mixed with progesterone - you insert them as though they were tiny tampons and they melt inside releasing the progesterone so it can be absorbed. Some ladies prefer to put them up the 'backdoor' but its personal choice. nothing to be squeamish about - compared to all the other 'stuff' you end up having shoved inside for IVF/ultrasounds/saline scans/early pregancy scans etc!

I guess one thing to keep in mind all the time is that you are a) doing this to have a baby (which is obvs important to you) and b) if you do get your wish, you are likely to have to go through more painful and embarrassing things than this in the course of actually having that baby - which will make pessaries and shots look like a walk in the park! 



milliemorley said:


> I was told that my CD19/CD5 issue could be overcome with IVIg, I asked if I needed any other treatment like steroids or clexane but they said no. I'm currently at the ARGC in London. I've read that some of you have the same and following IVIg your levels have dropped. I read one lady had a reading of 25 and it dropped to 11. I'm thinking .. I'm gonna need A LOT of IVig to get my levels down .. am I right?
> 
> My reason for this topic is to ask if anyone else out there has been diagnosed with the same condition? ... I would love to hear some positive stories of ladies having given birth after having high CD19/CD5 cells and having IVIg ...


Don't have any answers for you, but there were some FAQs about CD19+5+ in the FAQ files section of the yahoo immunology group

http://health.groups.yahoo.com/group/immunologysupport/files/FAQs/ - there was something in Nov 05 and there may be other bits too - you need to join the group if you are not already a member.

The only bits I think I remember are: 1) it is associated with autoimmune conditions e.g, thyroid conditions but you should have been screened for that already 
2) Dr B did recommend Tx with IVIG
3) Dr G normally recommends at least 100 mg gestone (because of the likelihood of anti-progesterone antibodies
4) Dr B said that it doesn't necessarily come down with IVIG Tx but it doesn't necessarily affect your chance of Tx success as long as the underlying causes (any autoimmune condition and the immune imbalance that is being soothed by the IVIG) are being treated.

Hopefully everything will turn out well for you once you get your IVIG Tx (presumably you must need to have ICSI because of the ASAs) - if it doesn't work, I guess maybe you would think about sperm DNA frag testing/tunel - just because of the failure to reach blast and the repeat mc at 6 weeks? Although I'm not sure all doctors think its a definitive test.

sorry not more help - hopefully someone else will help better


----------



## itsmyturn

Duly noted, right am on the case


----------



## niccad

Hi all - apologies for the me mail and the rant... 

Things didn’t go so well for me at my first scan this morning. I’m on day 6 of stimming (have had 5 actual shots of menophur). Whereas last time at this stage I had 11 follies, this time I only have 4.   They are all pretty big for so early as well which isn’t good so they are reducing my dose. Sizes are 18!!!, 15, 15 and 13 – I’m hoping that slow growing being good thing is a myth. I’m really really upset.  Just don’t know why there are so few, but think perhaps short protocol isn’t for me. When I had my baseline scan equivalent on day 2 I had a few follies which you apparently have every month right at the start. I think those ones have just ballooned up rather than any new ones appearing. All very upsetting – I talked about cancelling but they were optimistic saying ‘it only takes 1’.. I know I know… but I was expecting more than 10 (actually more than 15 really). I stupidly assumed this hurdle would be ok-ish so I’m gutted.  

I'm with the Bridge and I’m sooooo peed off them… already.  I emailed the consultant twice over the past 2 weeks re intralipds, clex and pred and he didn’t get back to me. This morning no one had a clue about my questions and I had to wait for an hour for the consultant to come in so I could see him. After saying originally that they could copy all my immune treatment I’m realized that it’s all just talk. They’ve never done intralipids and said that to do it would cost £2000!!!!  Luckily I called DrG and am seeing him at 2pm today for a drip. Feel bad as I haven't spoken to him for over a month and he didn't know I was starting again. … They also don't prescribe clex and pred until after EC... This is way too late for my body to react and get balanced... I'm ignoring them & am starting them tomorrow. Panic panic and not what I needed. 

DH wasn’t with me this morning so I ended up hiding in the loo at the Bridge having a secret cry,  having another cry in front of the nurse who was taking bloods   and then having steam coming out of my ears in anger about the drugs!!   What a lovely way to start the day.

Rant over and crying stopped now… sorry


----------



## agate

niccad said:


> Hi all - apologies for the me mail and the rant...
> 
> Things didn't go so well for me at my first scan this morning. I'm on day 6 of stimming (have had 5 actual shots of menophur). Whereas last time at this stage I had 11 follies, this time I only have 4.  They are all pretty big for so early as well which isn't good so they are reducing my dose. Sizes are 18!!!, 15, 15 and 13 - I'm hoping that slow growing being good thing is a myth. I'm really really upset. Just don't know why there are so few, but think perhaps short protocol isn't for me. When I had my baseline scan equivalent on day 2 I had a few follies which you apparently have every month right at the start. I think those ones have just ballooned up rather than any new ones appearing.


Sorry you are having such a cr*p day. This is sort of how the SP is supposed to work though - egg collection and hence embryo numbers are generally lower than on the LP. Generally you recruit fewer follicles than on the LP - just the best set of the antrals on your basline scan. The theory is that by doing this you are selecting the best cohort of follicles - and hopefully they are the ones that are most likely to give you the genetically best eggs. The other theoretical advantage is that by developing a few good quality follicles (and eggs) rather than lots, you hopefully have a uterine environment that is more hormonely normal than if you had massive E2 levels from heaps of follicles - this is supposed to give you an edge for successful implantation. Hopefully all will be well and by the time you get to ET you will have at least 2 fab embryos from this 'more gentle' stim.

At least Dr G has come through for you for the ILs!

I hope everything turns out right for you and its just a 'bad scan day'.

good luck!


----------



## ells

Niccard     so sorry hunni.  I know exactly how you feel.  We did the SP last time and it all seemed to be going well with lots of follies - I had 15 at EC but only got 4 eggs and then only 2 embies as the other 2 eggs where immature.  But, we got fab embies and I am sure that if I was doing an Immune tx then it would have been a positive ending.  These clinics can be very frustrating hunni.  I am sure Dr G will sort you out and get you back on track.  Hopefully you will get a few more follies and some nice juicy eggs and great embies   .  Sending you a massive   .

Ells

PS you are allowed to rant and put me posts sweetie, we are all here to help and be the sholders you need!


----------



## milliemorley

Agate and Ells

Thank you both for you replies .... Ells, you have been very helpful indeed. Thank you for the URL you sent, I shall take a look at this now.  

Yes - we are having ICSI because of the ASA's, interestingly DH's first test came back with 98% but he's since had another and its dropped to 80% .. not sure if this is due to the enormous amount of vits he is taking or not?

Its interesting what you say about thyroid function, apparently mine is borderline underactive .. I have real issues with losing weight even though I am really active and eat a limited diet. So maybe I'll need some medication for that? Also, I've always suspected that my luetal phase is sub standard as I have a 28 day cycle, ovulate on day 18 .. so thats only 10 days post ovulation and from what I've read, that isn't enough?!

Thanks again for your replies ladies ... I guess I'll have to wait and see what happens.

Love Millie xxxxxxxxxx


----------



## itsmyturn

niccad  

just a short one...really sorry niccad...it sounds like they lured you in with agreeing to the immue treatments initially...but then just carried on...their way!!!! 

Agreed, that Dr G came to the rescue...


----------



## berry55

Hi Girls,

Just wanted to let u all know i spoke to Dr G this morning. Got my perscription for humira too. So i need to right a letter to Central Homecare now and put my prescription in with it, is that right?
Dr G told me to start the humira straight away. 

How long does it usually take for Homecare to get ur drugs to u?? Am i right in saying that i can start LIT when ever i want?? it does not have to be timed with the humira? or am i wrong? 

Berry xxxx


----------



## lalaby123

Niccad - so sorry you have had such a bad day     if its any consolation I did the short protocol and like you my follies were too big on first scan so i had a very early EC and short stim and only got 6 eggs of which only 3 were mature but I got 2 good embies out of those and because of the immune treatment they both stuck so don't lose hope this early honey. I know its worrying though as I wasn't happy with my 6 but just wanted to let you know that they are right. You only need one good one. 

Millie - sorry for your losses so far. According to Dr Beer CD19/5 is a class of B cells that is involved in autoimmune disorders (conditions where the body mounts an immune response against a body tissue). it is mostly seen in people with antibodies to hormones. Was this the only thing that was out of balance in your NK assay? ivig should bring your levels down but its important that they do it early enough in the cycle ie BEFORE EC and then upon BFP and then again upon heartbeat scan. If ARGC don't follow this protocol i strongly recommend you to have a consult with Dr G. He charges £120 and do your immune stuff with him and your ICSI with ARGC. Dr G used to work at ARGC for 5 years anyway. Also the other advantage is that Dr G can treat you with intralipid which is now replacing ivig and costs one quarter of ivig. Many people respond better to intralipid than ivig. In anycase its good that you have gone down the immune route as something is clearly preventing you staying pregnant. I think he would also prescribe steroids and clexane as they both lowers NK activity. As for your thyroid what is your TSH level? if its over 2 Dr G prescribes thyroxine as he believes anything over this is not optimal for pregnancy. Also have you had your level I immune tests done to check for other autoimmune issues such as Antinuclear antibodies, antithyroid antibodies, antiphospholipid antibodies? Also have you been tested for blood clotting disorders? If you haven't you should get these done as well. When are you starting your cycle?? If you want positive stories, I had high overall NK activity which was the cause of my early miscarriage and subsequent unexplained infertility but with steroids, clexane, ivig and intralipid I am so far 12 weeks pregnant.  

Berry sorry can't help with humira or LIT as haven't had those

Hi to everyone else xxx


----------



## agate

berry55 said:


> Hi Girls,
> 
> Just wanted to let u all know i spoke to Dr G this morning. Got my perscription for humira too. So i need to right a letter to Central Homecare now and put my prescription in with it, is that right?
> Dr G told me to start the humira straight away.
> 
> How long does it usually take for Homecare to get ur drugs to u?? Am i right in saying that i can start LIT when ever i want?? it does not have to be timed with the humira? or am i wrong?
> 
> Berry xxxx


if you phone [email protected] and ask to speak to Jade Herrington - she will usually let you fax the prescription to her - once she has it, you can give her your card details over the phone and she can usually arrange the courier within 1 or 2 days if you need it urgently.

I don't THINK you are supposed to take the humira in the same week as having LIT and you need your humira shots to be 2 weeks apart - other than that, I don't know. You also shouldn't start it if you pick up any nasty infections or bugs.


----------



## niccad

Thanks so much for your replies.... amazing how this site can make you feel so much better isn't it. Dr G was absolutely lovely this afternoon. I had a consultation (even though I wasn't expecting it) and he didn't charge me for it & he had a long chat with me when the intralipids were done. He said similar to Agate - that SP leads to less follies. He wasn't too hopeful for me given the size already but he also said 'you never know' and did his little wink. My estrogen level's have come back at 2696 - does this mean anything to anyone 

Millie - welcome to the thread. Sorry - I don't know about thyroid 
Berry - again sorry, not sure - but think it should be the same week

x


----------



## berry55

agate - is cenral homecare and h&H the same place?


----------



## Louiseb26

Berry - I spoke to Dr G this morning regarding when to start Humira.I'm having LIT on Tuesday and he wants me to start Humira on Friday,then again 2 weeks after that.

I sent my prescription to [email protected] by recorded delivery yesterday...they will deliver it on Monday in the morning.

Lou xx


----------



## Louiseb26

berry55 said:


> agate - is central homecare and h&H the same place?


They are two different places Berry.
Health care at home works out cheaper at £745 and Central health care at home is £822.25
They were the cheapest i found.

Lou xx


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## berry55

louise- thanks for that. Do u have health care @ home contact info? xxx


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## Louiseb26

Berry - Have pm you the info.

Lou xx


----------



## fi7

hi all

just popping on and reading all the thread, some really useful info thanks

not sure i can answer many questions, but can tell you that i have a lovely daughter (trying for a second) thanks to pred, clexane, cyclogest and one dose of IVIG, so all the needles tests, worry and stress are are worth it. (oh and the small bill!) 

a question from me, do you know if you can do immunes under Dr Gorgy and cycle at the ARGC,  has anyone done this - do they allow it?

thanks , keep going all and keep positive

fi


----------



## sarahh

louiseb - interesting what you say Dr G said about having the Humira nxt Friday after the LIT on Tues - I am now thinking I might pack a couple of humira in last minute and have been searching all eve to find out how long you have to wait between having LIT and Humira and on the Humira board I found a post saying that Dr G was with Dr T in Athens in September and that they agreed that there should be one clear week between LIT & Humira.  Are you on a tight time schedule?    As you know I'm hoping & praying to have LIT on Tuesday too - (oh weather will you stop messing us all around now and buck your ideas up - might leave now to get to heathrow for Tuesday  ).  

Millie - not sure about IVIG bringing down CD19/5 levels but I know that you will need Gestone.  I too have DH with terrible sperm (almost everything wrong but not such high ASA).  He only has 5% normal forms      I imagine that the high CD19/5 it is treated with IVIG / Intralipids / Prednisolone - my level is raised but not too significant.  

Niccad - sorry you've had such a sh*t day.  Hope some more follies appear   or those few you have have beautiful eggies in   

Sorry off to bed, been searching about Humira all night - now my brain is over-saturated with information I'm off to mull it over in bed!!! 

Oh, does anyone know how long you have to leave between the second humira injection and the start of stimms?  I'm gonna be on a tight time schedule as DH is away from 7 March for one wk - the way I calculated it we would be due EC 5 days before he goes - not leaving much room for error!!!  

Sarah x


----------



## agate

sarahh said:


> Oh, does anyone know how long you have to leave between the second humira injection and the start of stimms? I'm gonna be on a tight time schedule as DH is away from 7 March for one wk - the way I calculated it we would be due EC 5 days before he goes - not leaving much room for error!!!
> 
> Sarah x
> [/quote
> 
> Sarah: Are you going to retest TNFa before cycling? Aren't you supposed to wait 1-3 weeks after the humira before retesting? I have a feeling that its 1 week if you are planning to do a 2nd course of 2 but its 2-3 weeks if you planning to go ahead and cycle? Or are you going to go ahead and cycle without?
> 
> Berry: - did you see this earlier post of Cozy's - I think it might help with your earlier question?
> http://www.fertilityfriends.co.uk/forum/index.php?topic=213275.msg3418167#msg3418167


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## Cozy

Sarah,

When I asked Dr T about taking Humira, he told me to have my 1st shot one week after my 1st LIT and then my 2nd shot 2 weeks later.

I only had 2 shots, so I'm not sure how it would work for the people having 4

Cozy


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## berry55

i think i get why i have 2 start the humira asap. I think its cos i have 4 injections of it, so obvioulsy it will take 8 weeks to do then i need time for a retest. So i'm gonna go with what Dr G says as i wanna have tx about april time. Thanks everyone for the help, i dont know what i would have done without u all! I seriously would b staring at my results and crying!!! 

We now have decided to go for donor LIT, do u all think i have done the right thing 

Our DQ ALPHA's are mine: 1.4,4.1 and DH 4.1,4.1 

Berry xxxx


----------



## Louiseb26

Louiseb26 said:


> sarahh said:
> 
> 
> 
> louiseb - interesting what you say Dr G said about having the Humira nxt Friday after the LIT on Tues - I am now thinking I might pack a couple of humira in last minute and have been searching all eve to find out how long you have to wait between having LIT and Humira and on the Humira board I found a post saying that Dr G was with Dr T in Athens in September and that they agreed that there should be one clear week between LIT & Humira. Are you on a tight time schedule? As you know I'm hoping & praying to have LIT on Tuesday too - (oh weather will you stop messing us all around now and buck your ideas up - might leave now to get to heathrow for Tuesday ).
> 
> Millie - not sure about IVIG bringing down CD19/5 levels but I know that you will need Gestone. I too have DH with terrible sperm (almost everything wrong but not such high ASA). He only has 5% normal forms  I imagine that the high CD19/5 it is treated with IVIG / Intralipids / Prednisolone - my level is raised but not too significant.
> 
> Niccad - sorry you've had such a sh*t day. Hope some more follies appear  or those few you have have beautiful eggies in
> 
> Sorry off to bed, been searching about Humira all night - now my brain is over-saturated with information I'm off to mull it over in bed!!!
> 
> Oh, does anyone know how long you have to leave between the second humira injection and the start of stimms? I'm gonna be on a tight time schedule as DH is away from 7 March for one wk - the way I calculated it we would be due EC 5 days before he goes - not leaving much room for error!!!
> 
> Sarah x
> 
> 
> 
> Sarah - Im going to go with what Dr T says.Take your first shot of Humira one week after LIT.Then take second shot 2 weeks later.I'm not on a tight schedule so i really dint know why he suggested that.I'm praying to the snow stays away...see you on Tuesday.xx
Click to expand...


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## mag108

hi everyone
Sorry I havent been such a great poster recently
I finally got to relax a little today, still more to come I hope, feet up, TV on etc. My xmas and New yr were so busy by the time I got back to work I was totally wiped. The culmination yesterday was a migraine (my 2nd in a week).

So now I wait to see what the weather brings tomorrow.
Reason: Supposed to fly Gatwick-Athens on Mon afternoon.{Ladies going to Athens this Tues, anyone ealse anxious (Sarahh see you are) about the weather!!!!!!!!!!) what timing!

Now thinking I should catch a train tomorrow to London rather then Mond am.
Will be closely monitoring situation as if worst comes to worst and the Easyjet flight gets cancelled I am may need to fly from Heathrow, on another airline. Any tips gratefully received.!

Nicaad: dont lose hope.Over on poor responders thread 6 is a good crop. Fingers crossed for you hun
XXX


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## ratsy

Hi girls 

Can i ask you a question how long does it take to get your blood tests back from dr G 

Thanks R x


----------



## agate

ratsy said:


> Hi girls
> 
> Can i ask you a question how long does it take to get your blood tests back from dr G
> 
> Thanks R x


it depends which test - some take longer than others - DQas (and karyotyping) take the longest (I think). The turnaround time for tests done in the UK at TDL are listed in TDL's A-Z test index on their website www.tdlpathology.com

The turnaround time for tests sent to chicago is given in the detailed info for each test on RFU's website
http://rosalindfranklin.edu/DNN/home/CMS/Microbiology/CILab/CITests/tabid/1311/Default.aspx
but you need to add on an extra 1-2 days to cover the transport time to chicago (and factor in weekends)

This post contains an unconfirmed link/information and readers are reminded that fertilityfriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## ratsy

Thanks agate 

I know im not going for another coulple of weeks but like to be prepared and know what questions ive got to ask 

Thanks R x


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## deegirl

just bookmarking!


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## itsmyturn

please do you have opinions on;

- My tests shows i don't have any blood clotting issues etc, so i don't really know why "clexane" was pescribed for me.... is it - incase i develope issues OR if i get preggers to prevent blood clot issues

My MTHFR,Factor V (leiden),Factor II prothrombin,FTA,Antinuclear antibodies,Anti-dsDNA antibodies - *all neg,*
anti-histone antibodies,anticardiolipin ab's igc,anticardiolipin ab's igm - *low end of normal limits*

Dr G did ask me to take aspirin aswell, but i do anyway, so not sure about the clexane ...and at 100mg aswell...am i gonna run the risk of overthinning my blood, when its not even over clotting in the first place?! Why would i need it, if my tests have yet to show that i'm at risk of blood clotting? Or just assuming that i will clott? 

Abit odd don't you think? Unless clexane is used for any other immue issue that i'm not aware of, i'm abit skeptical about it, based on my non-clotting issues??


----------



## agate

itsmyturn said:


> Dr G did ask me to take aspirin aswell, but i do anyway, so not sure about the clexane ...and at 100mg aswell...am i gonna run the risk of overthinning my blood, when its not even over clotting in the first place?! Why would i need it, if my tests have yet to show that i'm at risk of blood clotting? Or just assuming that i will clott?


100mg clexane Are you getting mixed up with the gestone dose? I would have thought you would have been on either 20mg or 40mg? 20-40 is usually prescribed if you have no/low clotting issues and 60mg is prescribed if you have something like **** MTHFR.

The reason for prescribing the lower dose even if you have no clotting issues is the theory that tiny blood clots in the developing placenta might result in failed implantation/lack of fetal development. Its usually something that ladies who have had multiple miscarriages/failed IVFs are put on 'just in case it helps' without doing much testing. The higher dose is usually used where there is a proven clotting issue.

I was told that at a dose of 20-40mg any risks of taking clexane were negligible - it is a low molecular weight heparin so it doesn't put you at significant risk if you were injured or had to have emergency surgery or something like that. If you were really worried you could ask to have your clotting tested regularly whilst taking it, but it isn't something that is normally required if you are only on a low dose. Some ladies take a calcium supplement with it just in case.


----------



## itsmyturn

Thx Agate  

yes clexane inj 100mg sc/day !! - thats why i'm reliefed now that i double checked. I did read someone else getting prescibed alot of clexane and he reduced it, but they had clotting issues! My tests shown none, which is why i was perplexed...my gp thinks its crazy aswell shes worried...


----------



## itsmyturn

my last remaining thing is the *prednisolene tab 25mg/day (??);*
thats for; 
CD19+Cells, CD5+ *28.2 Limits 5-10

*he's gonna combine that with intralipids, since*

NK Assay w/Intralipid
50:1 w/Intralipid 1.5mg/ml 2.9
25:1 w/Intralipid 1.5mg/ml 2.4

*and since i don't need intralipids (he didn't say amount?! Abit strange strange again?what should i expect?) for anything else, since*

NK Assay (% Killed) Panel
50:1 10.4 phew! i think! Limits 10 - 40

*However i've read that prednisolene should not be used if thyroid treatment (investigating at mo), so i'm thinking dexamethasone ? if i do, do you know approx amounts to use given he wants me on 25mg/tab,if thats correct? (yet to look into).

I feel awful for checking on his prescrip., but better safe than sorry...*


----------



## agate

I guess you need to speak to Dr G and check if its a mistake about the 100mg clexane - I'd have thought he probably meant you to be on 40mg?  But maybe there is something I don't know here and some reason for the 100mg.


----------



## itsmyturn

agate said:


> I guess you need to speak to Dr G and check if its a mistake about the 100mg clexane - I'd have thought he probably meant you to be on 40mg? But maybe there is something I don't know here and some reason for the 100mg.


will do, but my instinct...

my new gp thinks i'm gonna off myself with this prescrip...so i said what do you expect, the ex-gp diagnose me with unexplained, practically shoving me into the world of ivf, now you're worried about all the drugs... talk about me, rock & hard place...


----------



## agate

itsmyturn said:


> my last remaining thing is the *prednisolene tab 25mg/day (??);*
> thats for;
> CD19+Cells, CD5+ *28.2 Limits 5-10
> 
> *he's gonna combine that with intralipids, since*
> 
> NK Assay w/Intralipid
> 50:1 w/Intralipid 1.5mg/ml 2.9
> 25:1 w/Intralipid 1.5mg/ml 2.4
> 
> *and since i don't need intralipids (he didn't say amount?! Abit strange strange again?what should i expect?) for anything else, since*
> 
> NK Assay (% Killed) Panel
> 50:1 10.4 phew! i think! Limits 10 - 40
> 
> *However i've read that prednisolene should not be used if thyroid treatment (investigating at mo), so i'm thinking dexamethasone ? if i do, do you know approx amounts to use given he wants me on 25mg/tab,if thats correct? (yet to look into).
> 
> I feel awful for checking on his prescrip., but better safe than sorry...*


Intralipids is given as a standard infusion (20% 100ml diluted in 300 ml saline - I think) and is given in a slow drip - you don't need a prescription for it if you are going to have it in his office - but you will need to ask for one if you are going to have it delivered at home by Healthcare at Home (you'd need to send them the prescription, pay for it (most of the cost is the cost of the nurse's time in giving you the drip rather than the emulsion itself), arrange the appt time and then the nurse will come to your house with the kit and give you the drip.

Prednisolone 25mg is a standard dose for Dr G's immune patients (a lot of IVF clinics give lower doses e.g., 10-15mg though - but its usually based on guessing there is a problem after failed IVFs rather than specific issues diagnosed by testing, I think).

You probably won't be able to buy 25mg tabs - but will get 5 x 5mg instead - this is better because when you come to stop them you will need to wean off them slowly which is easier if you have 5mgs.

I don't know about your question about thyroid conditions, except that I think the reason for caution is that steroids are eliminated more slowly if you have hypothyroid (wouldn't this apply for dexamethasone as well as prednisolone?)- but I would have thought that you would want to finish your investigations for hypothyroid first because if you do have a problem and you don't get it treated, it won't help your chances of this all working. If you got it treated properly, presumably then taking the pred wouldn't be a problem?


----------



## itsmyturn

re intralipid - ok

re prednisolone -good to know its in 5mg, so any bad effects, could self-reduce

re thy - both pred & dex  steriods - crap, true about sorting thy(if need to), pre-immune.

much obliged again agate....any time you need anything let me know....


----------



## agate

itsmyturn said:


> re prednisolone -good to know its in 5mg, so any bad effects, could self-reduce


take pred w breakfast so it doesn't cause insomnia - the tabs come in 2 types - enteric/gastric resist coated (red pills) and not coated (white pills) - the white pills have a really nasty taste so the enteric are nicer to take but its not the end of the world if you can only get the white ones.

a lot of people feel really good on steroids - apart from insomnia, most of the side effects are those things that build up over time - tends to make you hairier and put on weight - so they only become an issue if you have to take them for longer - because you get pg but if that happens you won't care so much because these are a small price to pay - you just need to be careful about not overeating and deal with any furriness if and when it arises.


----------



## niccad

Hi all

Itsmyturn - 100mg of clexane does seem high with no clotting issues. I'm on 40mg and have no issues. As with the prednisolone DrG advised me to do the clexane injection in the morning. Think it's so they can check your levels if there is an issue (the test has to be exactly 2 hours after the injection). I turned into a bit of a bleeder but my levels when checked were ok. Oh, and on pred - I got a combination of 25mg pills and 5mg pills so that I didn't have to shallow quite so many every day and yet was able to add extra (I went up to 40mg last time) and wean off... 

Mag & Sarah - good luck with Athens this week. I hope the flights are all ok and there's no issue with the weather.

ratsy - for the chicago tests it takes between 10 days and 2 weeks. I was called Akville every day to see if they came in as she doesn't phone you to say they're back. It's good if you have a fax as she'll just fax them over (not so great if you're in an office with 1 fax machine as I've experienced   )

Fi7 - Lots of girls are at ARGC and DrG. ARGC don't do intralipids which is why i guess. DrG is ex ARGC himself...

AFM - I have my second scan today - it's been exactly 1 week since i started and look like I won't be going back for another scan. The 4 have got bigger & are now 24, 22,22,22 and one at 12. No more stims for me and I'm doing the trigger shot tonight for EC on Tuesday. had no time to start clexane which is annoying - guess I'll just have to start after EC. It's all happened far too quickly for my liking so I've lost all my PMA and have kind of already writen off this tx   . Back to DrG for another intralipid tomorrow and then praying that my 4 fast growers will have mature eggs in them   

Enjoy the last bit of the weekend all 
nic xxx


----------



## berry55

Hi Girls,

Quick qn,

do u think it will b ok for me to go 2 a spa day at the end of the month? reason i am asking is cos i will have started the humira injections by then. Saunas and jacuzzis... i'm a bit worried. xxx


----------



## ratsy

hi nic 

Thanks for that i think il leave it 10 days and keep calling from then ive spoken to the office in work and they said no probs about sending results to them i wont understand them so they certanly wont  

Dont be losing your pma i know you havnt taken your clexane but things happen for reasons i think youl be fine one embie to take with your immune drugs thats all it needs look at cath with her fet it may just surprise you yet 

Wishing you all the luck in the world for e/c you just keep positive  

R x


----------



## deegirl

AGATE - You had told me that Dr T's schedule is to 'do LIT every 2 weeks but then to skip it if it is a greek holiday or if it his personal holiday.'  My question is, if he skips a Tuesday due to Greek/personal holiday does he then do the LIT the following Tuesday, meaning that the pattern would be broken?  ie he's due to do LIT on Tues 6th April so if he doesn't due to a holiday would he do it on the 13th instead or on 20th as per original schedule?  

Thanks xx


----------



## ells

Nic, 

hunni   .  Dont give up yet hun.  I am sure you will have some nice juicy eggs and get some beautiful embies.  Sending you lots and lots of                                   .

SarahH and Mag enjoy Athens.  You should both be okay on the flights.  

Hi to everyone else.

Ells


----------



## Zeka

Nic, hope your trigger has gone ok this evening and you'll have some high quality eggies on Tue. I can understand how stressed you must be but try to keep the pma going if you can, just wanted to send you a hug! Did Dr G give any insight into why things have happened so quickly? Were you on a much higher dose? 
Zeka x


----------



## agate

deegirl said:


> AGATE - You had told me that Dr T's schedule is to 'do LIT every 2 weeks but then to skip it if it is a greek holiday or if it his personal holiday.' My question is, if he skips a Tuesday due to Greek/personal holiday does he then do the LIT the following Tuesday, meaning that the pattern would be broken? ie he's due to do LIT on Tues 6th April so if he doesn't due to a holiday would he do it on the 13th instead or on 20th as per original schedule?
> 
> Thanks xx


Deegirl: Sorry, I don't know, but I think he tries to keep fairly frequent clinics so that would break the pattern in the way that you say - otherwise if he missed out a clinic some ladies would have to wait 6 weeks between shots (rather than 5). The best thing to do would be to pm the girls who are going out to athens to ask him whether he is doing the dates you need.

Niccad: fingers crossed it will all still be ok. Hopefully its natural selection at work and those follicles will be the optimal ones. The best you can do now is try and keep rested and calm to avoid firing off your TNFa. It does seem to be that the most unpromising looking cycles/chains of events end up giving us immune girlies P/Gs. Best of luck for EC. A x


----------



## mag108

nicaad: Heres some help for PMA (xxx) Fingers crossed it all works out for you hun. On the poor responders thread 4 is a good crop and you dont know until they are out. Thinking of you on Tues


----------



## Louiseb26

Hiya Ladies

Cozy - Wanted to wish you all the best for Tuesday lovely.Big   for you xx

Nicaad - Good luck for Tuesday...stay strong Hun xx

Hope everyone is doing ok.

Off to Athens tomorrow...please stay away snow  

Lou xx


----------



## niccad

Thanks for all your support girls.....  
Zeka - I was on 375mg menophur for the first 5 days then 2 doses at 225mg. DrG wasn't my consultant for the cycle, but said that the SP hasn't worked for me & they shouldn't have started when I had such obvious follies at the scan before I started... 

Lousie - good luck tomorrow... x

Quick question - I am nil by mouth from midnight tonight. Should I still take my pred tomorrow am as usual, but with only a sip of water or wait until after EC?? 

xxxxx


----------



## niccad

Oh - and is anyone at DrG's today?? I'm seeing him at 3pm for another drip...


----------



## Zeka

Nic - I've always been advised to stop pred when nil by mouth...even a sip of water isn't allowed (..had a friend who's cycle they threatened to cancel cause she had a glass of water!). Hopefully you've got some great eggs there despite the 'wrong' protocol. Good luck!!
Zeka x


----------



## agate

if its a general anaesthetic then it really is nil by mouth but if its only sedation, then you are usually allowed water so I guess you must be having a GA, Niccad?


----------



## ells

Morning ladies,

Niccard, keeping fingers and toes crossed for you sweetie.     If it were me I would wait till after your EC to have your pred tablet unless you are just having sedation, you dont want to be sick when you come round hunni.    

Lou, hope you get on okay tomorrow.  You shoud be fine as it looks like the weather is warming up now.  Although it still feel freezing  

Cozy, are you in for a scan tomorrow?  I hope it brings lots and lots of good news hunni.

Lalaby, how are you sweetie  

Dee, hope you are okay to hun.    

Agate, hope you are okay and nice and warm hunni.

Hello to everyone else  .

Well I have my first humira injection today - I am really   that it helps and makes me feel better (and that my TNFa's come right down of course!) .  because I am having them for my cronhs I have to have the administered by a nurse   - I am more then happy to do them myself!  I have also got the nod from our clinic, will be doing LP and will be able to start on my next AF which should be here next week - unless of course we get a natural miracle in the meantime - very very very unlikely.  Once i have my protocol I will ring Dr G and sort out the other bits and pieces IVIg and intralipids.  We are on PA's LIT list so that should be okay.  My clinic are giving me clexane, pred and asprin so I dont have to worry about that.  

I have a question ladies, now I know that we 'dont' self medicate   but....   with the pred, what is the best thing to do when upping the dose?  Do we keep it fairly low and then up it after EC or after ET?  And... with the asprin, what time of day is best to take it morning or at night?

Ells


----------



## niccad

Hi Ells - um, no self medicating aside - I'm on 25mg and will go up to 40mg from ET for about 5 days (to cover implantation time) and will then wean back down to 25mg again until OTD. Not sure what others have done... Hope that the humira injection goes well x


----------



## berry55

Hi girls,

I'm strating to get a little worried that i have missed something with my results (or that i just didnt understand Dr Gorgy)

Can any1 tell me if i am missing some immune drugs from what my results show i need... if that makes sense?!

As far as i know i need LIT (donor) Humira and gestone.

Thanks xxxxx

DQ ALPA GENOTYPE

My Hubbys - 0501.0505
Mine - 0104/0105.0505

TH1:TH2 intacellular cytokine ratios

TNF-a:IL-10 (CD3 +CD4+) 57.6
IFN-g:IL-10 (CD3+CD4+) 17.2

IMMUNOLOGY

Quantiferon- TB GOLD TEST - NEGATIVE (Neg = <0.35)

NK ASSAY (% KILLED) 
Name Result
50:1 13.5
25:1 9.0
12.5:1 6.5
IgG conc 12.5 50:1 6.5
IgG conc 12.5 25:1 5.7
IgG conc 6.25 50:1 4.6
IgG conc 6.25 25:1 3.4
% CD3 83.6
%CD 19 4.8
%CD 56 9.6
% of CD19+ cells, CD5+ 35.4

**notes > 10% reduction in killing at each effector/target ratio.

LEUKOCYTE ANTIBODY DETECTION

Flowcytomerty NEGATIVE
(T-Cells) IgM+ 2.8
(T-Cells) IgG+ 2.6
(B-Cells) IgM+ 28.6
(B-Cells) IgG+ 23.3

NK ASSAY W/ INTRALIPID

50:1 w/ Intralipid 1.5mg/ml 6.9
25:1 w/ Intralipid 1.5 mg/ml 3.8


----------



## niccad

Berry - I think that's all. Your NK's are fine except the 19+5+ which the gestone addresses. Humira is for your high TNFa and LIT for your LAD...


----------



## berry55

niccad- thanks for that. I was worried that i was missing something. xxx


----------



## Louiseb26

Ells - Thanks lovely.

Good luck with the injections.Where do you inject Humira? Is it difficult to do? I have to do them a week after LIT,then again in 2 weeks.Don't know why Dr G told me to do it on Friday...if it has to be a week apart.

Looks like alot of us ladies are all going to be busy on Tuesday.Good luck to you all  

Lou xx


----------



## berry55

Lousie- the humira injection has 2 be a week apart from the lit


----------



## Cath34

Hi everyone, I havent posted for a while but I just wanted to wish all you ladies a safe journey to Athens, it is a nightmare journey I know but its a means to an end. Hope the donor is a good one!!

Also the very best of luck to all those cycling this month.

niccad- I did the same with steroids, upped to 40mg after ET and then back down to 25mg after implantation period. I dont know if it did anything but Dr g reckons that anything above 25mg has no extra effect anyway??!!!


----------



## Newday

can I ask what the gestone is for?
dawn


----------



## ratsy

Hi girls 

Can i ask you a question if you have LIT  has it got to be 4 weeks apart can it be 5 .im only asking coz if i need it ive looked in book in work and people have already started booking time off .so was going to book some time off now in advance an hope to go around that time if i dont start booking ive got no chance of cover .i no im worrying in advance i might not need it but my with my luck i will and its a nightmare trying to get time off 

Thanks R x


----------



## agate

Newday said:


> can I ask what the gestone is for?
> dawn


gestone is progesterone in oil which is injected into the muscle - its an alternative to crinone gel or cyclogest pessaries.



ratsy said:


> Hi girls
> 
> Can i ask you a question if you have LIT has it got to be 4 weeks apart can it be 5 .im only asking coz if i need it ive looked in book in work and people have already started booking time off .so was going to book some time off now in advance an hope to go around that time if i dont start booking ive got no chance of cover .i no im worrying in advance i might not need it but my with my luck i will and its a nightmare trying to get time off
> 
> Thanks R x


I don't think it has GOT to be 4 weeks apart - but you will be limited by what dates Dr T's LIT clinic is open. His clinics are always on a tuesday and are normally fortnightly (except when there is a greek bank holiday or he has his personal holidays).


----------



## ratsy

Thanks agate 

I was thinking of going on the 20th so il have to work out fortnightly from now  and see ,some of the girls are going this week so go from this week 

How can i find out if its a greek hol i was thinking of going back then may 25th because ive got a week off whitsun week so hope that not a national hol over there 

Thanks R X


----------



## deegirl

Agate - thanks for replying to my post.  ShellieG is kindly going to ask Dr T if he's doing LIT for me on Easter Tuesday, when she is there tomorrow getting her LIT.  Then if he is, she's going to book me in for 9th March for my first one....such a wee star!  

Ratsy - as you have probably gathered I am in a similiar situation to you where I'm trying to work out my dates for LIT and worried that Easter Tuesday (when I would be due for my second LIT) might be a holiday for Dr T (although research tells me that the Greek Easter hol is just on the Sunday and Monday).  It might be a bit late for you to ask the girls now to check out your question tomorrow but it's worth a try.  Why not post and see?  Hope it all works out for you.  

All girls going to Athens tom - I wish you a safe, hassle-free, successful and fun day tomorrow!!  

Ells - I see you started the humira today.  Hope you have no ill effects from it and that it helps with your cronhs as well.  Is it easy to inject?  I need humira too unfortunately although my levels are only 31 so was hoping Dr G would say I didn't need it.  The funny thing is 8 months ago my levels were 22!!    I really don't understand all this stuff.

Nic - hope all ok with the trigger.

Dee x


----------



## ells

Hi Dee,

Glad that you are getting your LIT sorted   .  I had the humira but I didnt do it   I had to have a nurse do the little injection for me and it stung!  I havent had any probs, they even admitted me to the hospital to do the injection - what a faff over nothing   .  It would be easy to do yourself and there's not that much in the syringe anyway.  As they are treating me for my crohns I have a second one tomorrow morning and then 2 weeks after my third.  I told Dr G and he said it should be fine the results should be the same at the end.  My cons has also told me to start taking the immuno suppresents this week too.  I am quite pleased about this so hopefully I will get some benefit from them too for both the immune tx and my crohns   .

I had a bit of bad news today   , my AMH results came back and they are now 14.41 they were 40 something 8 months ago.  It came as a bit of a shock, so i am hoping this is just an anomoly and they will bounce back.  All my other results are normal including FSH.  The good thing is that the clinic are not worried so all being well we will be good to go and gets some frosties this time round.  

Cath great to hear from you hunni.  How are you feeling?  Hope that the bump is growing well. Thanks for the pred tip, anything that will help!!

Ratsy sorry I cant answer your question 100% but I believe that other ladies have not been dead on 4 weeks and some have gone at 5 -6 weeks.  I am sure you will be fine lovey.

Nic hope the trigger goes well.  Sending you some nice growing vibes          fora  nice juicy crop and some smashing embies!

Lou, the humira can go into your tum or thigh and its a pre-filled syringe which makes it less hastle.  It stung when the nurse put it in for me but only for a bit.  You will be fine, its no different to doing the normal stimming injections really.  Just seem to get a longer list of side effects.  So far I feel okay no probs.  They did say its more likely that I will get side effects tomorrow after the second injection but I think its because i am having them close together.  Good luck, when are you having your LIT?

How is everyone else?  Hope you are all well.

Safe trips to everyone going to Athens.

Ells


----------



## Toffee Girl

Hello Ladies

Haven't posted for a while - took a break - you know how it is!!  

Good luck for everyone getting to/coming back from Athens today - hope all goes well with your trips.

Cath34 - glad to hear you are doing well.  What's your due date/

Sarahh - just caught your last post, when will you be starting stimms?  We may be cycling together again as I am hoping to start around Feb 11th ish. Would be lovely to see you. 

Does anyone know if Dr Gorgy is planning any trips away that we need to work around for scheduling cycles/

Love to all 

Toffee Girl xx


----------



## Saffa77

Hi ladies

The bloods that are outstanding for me are the ANA anti ds DNA - does anyone know what this tests for??

Its under Fert and Gynae academy profiles on the doctors laboratory form.

Is it to test for things like lupus? - I am thinking I wont have enough time to get my results back before commencing treatment do you think its bad if I dont get them done?

S


----------



## Cozy

Hello ladies,

I hope you are well   

DH and I met this day 10 years ago and we thought today would be a good day to go for a scan and hopefully meet our long awaited baby. We went for the scan and were not disappointed. There on the screen was a flickering heartbeat, beating 90 beats per minute and everything looked just as it should. We have never been lucky enough to see a heartbeat, so it has been an emotional day for us both. We know its still along way to go but we are over the 1st hurdle.  

I truly believe that if I hadn't been to see Dr Gorgy and had all the tests done and followed his treatment plan I would not be sat here pregnant and very happy today. I know it doesnt work for everyone, but having the required treatment can give you much better odds and I like many others are proof that it can work.


Take care

Cozy


----------



## MissyMinx

Hi Cozy, have replied on the LIT thread, but just wanted to say   again.  Some days (today for some reason), I just feel so low about how we can deal with this - it just feels like such a mountain to climb, but then I hear a story like yours and it gives me hope that maybe one day our dream of being parents might come true.  I'm so pleased for you - enjoy every second.

Sending all the F&G ladies   and  

Love,

Em.x


----------



## niccad

Cozy - many many congratulations. It must have been soooo lovely to see a heartbeat. Just the thought of reaching that goal makes me well up. What a lovely anniversary present. You must have wanted to hug DrG. He really is a miracle worker!! I hope you and DH have a lovely evening celebrating...xxx

Ells - I'm sure the 14 is a one off. Everyone says AMH doesn't go up only down, but it seems that FF tells a different story. You're still in the 'normal' fertilisation category so try not to worry. Thanks for the good wishes today x

Dawn - gestone is progesterone. DrG prescribes it especially if you have high CD19+5+. I will be doing gestone and cyclogest x

Well - I had EC earlier today. My 4 fast growing monster follies all had eggs in, and even the 1 smaller follie (only 12mm at my last scan) also had an egg in it   . I was told that all 5 were average to above average quality which I can't really believe. Anyhow - just need to wait now and hope that the embryologist has a really steady hand and a good eye for spotting the best sperm to inject. I hope they call me early tomorrow.     that they fertilise and grow into nice strong embies.... 
Nic xxx


----------



## lalaby123

Cozy     that's wonderful news congratulations on the heartbeat and congratulations on your 10th anniversary what an emotional day it must have been for you

Niccad well done with the 5 days and good luck with the fertilisation. I hope you get at least one lovely embie to go back in

Ells hope no side effects from humira and AMH of 14 is still pretty good so no worries there

hi to everyone else and good luck to all the LIT ladies 

xxx


----------



## ratsy

Happy anniversary cozy  

And whoo hoo what an aniversary present you deserve it bet your both over the moon  

And thanks girls ,cozy agate cath , lalaby ,choice .you all give us hope and your so kind giving us valuble information to help us reach our dreams ,soz if ive missed anyone 

R xx


----------



## ells

Welldone Cozy - what a great anniversary pressie.  I bet you were both thrilled to bits     .  Enjoy the rest of your evening hunni.

TG hellooooooooo long time no speak   . Hope you are okay.  I am planning on starting DRing in Feb too.    

Saffa, how are you sweetie?

Nic's what fab news.  5 eggies   thats great hunni.  Hope they get nice and jiggy with your DH's swimmer tonight and you get brill fert rate!!!

Lalaby, how are you feeling hun?  Are you starting to get a bit of a bump now?  When's the next scan?

Hi to everyone else, hope you are all okay.    

I did my second humira shot today myself   , the nurse let me!!  It didnt sting as much today either.  So far the only side effects I have had has been a sore throat and achy knees.  This is apparently all good signs that its doing something   .  I have picked up my azathioprin too which I start tomorrow (its an immunosuppresent) so hopefully everything will be kept at bay.  I have to have weekly blood tests to check everything is okay.  Thank you for the reassurance on the AMH, I feel a lot calmer about it now.  I do think its an anomoly so if I have it done again at a different point in my cycle at a different time it may be different.  Still its good that it shouldnt affect tx!

Enjoy your evenings ladies   

Ells


----------



## berry55

Hi girls,

I send my prescription to H&H yesterday 1st class, when would i normally get a call from them for payment?? I did put on the cover letter that i needed the prescription asap. 

Berry xxxx


----------



## Saffa77

Hi ladies

The bloods that are outstanding for me are the ANA anti ds DNA - does anyone know what this tests for??

Its under Fert and Gynae academy profiles on the doctors laboratory form.

Is it to test for things like lupus? - I am thinking I wont have enough time to get my results back before commencing treatment do you think its bad if I dont get them done?

Ladies sorry reposted this as needing a reply asap as to what I should do about these bloods?? are they important and what are they ANA?  and how would you treat it should result be positive or negative

S


----------



## Ourturn

Cozy - really chuffed for you  

Saffa - sorry I can't help, hopefully someone else can.

Berry - why don't you call [email protected] and see if they have recieved it and check daily if they haven't. Post is running slower due to the weather. Next time you have to post something important go to the post office and send it via registered or gauranteed next day delivery.

Was lovely to meet so many of you yesterday. You are a font of knowledge, thanks you! 

I have to go out again on the 26th Jan. Anyone else comming out then too? 

We've had lots of snow over night and its still snowing here in Shropshire

Anna x


----------



## Saffa77

Thanks broody but its a standard test within the chicago tests all you ladies did - the reason why I have to have it done is because the lab didnt have enough blood.  Its the antinuclear antibodies does that make better sense?  I think its to test where you are positive (meaning you have too many anitbodies) or are negative - I think if positive you have an autoimmune disease like lupus or rhuematis etc etc.  All you ladies must of had it done when you saw Dr gorgy for chicago tests.


----------



## niccad

Saffa - I had my ANA tested as part of my rhemotoid arthitis testing and mine came back weak positive (I think). I had this test at the GP and just gave the result to DrG.... I was told that the steriods would sort the issue out so stopped googling! Sorry I can't help - but this wasn't a test I had at the same time as the Chicago tests....

Well - I got the call this morning and 4 of my 5 eggs have fertilised and appear 'normal'. I'm sooo happy and shocked - especially as i was so close to cancelling this cycle last week. I'm provisionally booked in for ET on Friday, although they'll give me a call that morning to let me know if there are clear winners etc. Can't believe that this is actually happening. Thanks for all your support girls xx


----------



## Ourturn

Saffa - I didn't have it done with Mr Gorgy as I must have had it done with all my level 1 tests a while back (which were all normal) 

Niccad - great news! Good look for Friday!


----------



## niccad

thanks sobroody - how did Athens go and how are the lumps?? Itchy i hope? 
how did the rest of you get on over there Lucky it wasn't today which this rubbish weather. I attempted to get to work and gave up after trying 2 stations...


----------



## Ourturn

Niccad...my spelling is terrible! Sooo tired, thats my excuse. Athens was fine. Clinic chaotic and we didn't get seen till late, so a bit of a rush getting to the airport, but it worked out. I have red lumps, sore but not itching yet...hopefully that will kick in, in the next day or two


----------



## Saffa77

once again thanks ladies for your help niccad all the best of luck with your eggies sounds promising!! Ok not going to worry anymore and i will be on prednisolne anyways so that should sort problem out if i have a problem.  Dont have time to get this test done.

S


----------



## Cath34

Well Cozy ,massive congrats to you, I didnt realise you were pregnant, Dr G really is a guru int he?!!!! Seeing the HB is amazing and makes it all real.

niccad, great news on your fertilization, best of luck for ET.

Toffee - Hi how are you? I am fine, but had a very rough 4months!! Better now hence I'm back posting!!
Anyone heard from Choice?

Sarah, how was Grecce hun? I was thinking of you yesterday  

Hi to everyone else. xx


----------



## mag108

well I am at home at last and totally wiped!.

LIT was fine, I was concentrating on answering Dr T so was distracted from what his asst was doing. Met the big gang that came on the BA flight, HI LADIES! Fantastic indeed to meet everyone, Blonde1, Sarahh, ShelliG, Lou, Annasobroody and everyone else' Sounds like you all made it back.

I got back to Gatwick, stayed overnight then train back to Manchester and straight to work! Having a full on relax tonight.

x


----------



## ells

Yey Niccard for your embies - sending them loads of growing vibes      

Glad to hear that everyone got back from Athens okay.

Hope everyone else is okay.   .  Totally wacked today, still nothing major from the humira just tired, still got a bit of a soar throat so all good.  

Have a great evening ladies,

Ells


----------



## Newday

I may have got my Con to prescribe the intralipids. I have lost the email from DR G can I check is it:

100ml 20% intraliopids with 500ml saline?

Thanks
Dawn


----------



## berry55

Hi girls,

Cozy - so so glad ur scan went well and u seen a strong HB, it must make it feel so real. xxxxx

Niccard- yey!!! thats great about ur fert    for them to grow strong for you!!! xxxx

Shellie- Just wanted to say thank you again for booking my LIT for me, you have taken so so much stress off me its amazing!   I'm glad ur LIT went well xxx

Sounds like all the girls who went to athens this week had a ball!!! who would have thought that having LIT done could be so fun!! lol Glad everything went well for you all! xxxx

i have paid my presrciption for humira so that will b getting sent out to me on monday. Does it matter what time of the day u take it? any tips?? also does it matter if u have AF?? I should b due AF on monday so i was gonna take the injection as soon at i get it. I think the sooner i start, the sooner i finnish lol 

xxxxx


----------



## Chicky Licky

Hi Berry - I wouldn't go as far as calling the LIT "fun"!!!!! but it was fun to meet everyone!
No probs about booking your appt. I remember how stressed out I was about it, so happy to help you out. 

Shellie
xx


----------



## berry55

shellie- does it hurt having the lit done? where abouts does it get injected? how long does it take? xxxx


----------



## Chicky Licky

Berry - in answer to your questions...

Yes, short sharp pains as each needle goes in. 
Forearm
Not long - max 5 mins.

Shellie
xx


----------



## sarahh

Hi all, well I'm having a really cr*p day today - my LIT arm is barely red, not even round the injection sites.  If anything its a tiny bit itchy.  Weird as it was throbbing after it was done.  

AND I had my TB test result back - and its a weak positive!!!!! Oh sh*t.  So, not only can I not take Humira but I have latent TB which could turn into an infection at some point.  Fan bloody tastic. 

There are just some days that you get the feeling that someone somewhere is trying to tell you something eh?  

Was talking to Dr G about the LIT, could one of the girls who went on Tuesday remind me who he told that he doesn't test the DQ Alpha numbers??  I did get that right didn't I?  Dr G was really surprised when I told him (so I hope I've got that right   )!!! 

Hope everyone is having a better day than me! 

Sarah x


----------



## berry55

Hi sarah,

I'm really sorry ur having such a rubbish day & i'm so sorry about the tb test. Life is sooo sh*tty sometimes isnt it?! I know what u mean about when  u get the feeling that some1 is trying to tell u something, my dh says that all the time to me. Does Dr T not check the DQ Alpha numbers for the doner please tell me i'm wrong, otherwise it would prob b better just 2 go with DH blood.... 

xxxx


----------



## sarahh

Berry - I'm just trying to double check that is what I think one of the girls said Dr T said on Tuesday, you must understand we were all very tired and getting a bit stressed that we had not much time to get to the airport before our flight but.... I'm sure someone said that.  Will let you know. 

Sarah x


----------



## berry55

sarahh - is there any risks actually having doner LIT? i know most things r screened for now but its still a worry in the back of my head.  But i know i need to do this for my own sanity. 

xxx


----------



## agate

sarahh said:


> Hi all, well I'm having a really cr*p day today - my LIT arm is barely red, not even round the injection sites. If anything its a tiny bit itchy. Weird as it was throbbing after it was done.
> 
> AND I had my TB test result back - and its a weak positive!!!!! Oh sh*t. So, not only can I not take Humira but I have latent TB which could turn into an infection at some point. Fan bloody tastic.


Sarah - sorry to hear that. I guess the only positive I can think of its that having latent TB is very common in some populations e.g, parts of urban london, yet having active TB is still rare - converting from latent to active is therefore also rare - but it is a risk with taking humira because that would block one of the mechanisms that stops the latent TB becoming active. I don't know which test you had but if it was Heath or Mantoux false positives are actually quite common. Even Tspot TB and quantiferon gold can give false positives, so you might want to have a retest to make sure but also discuss with your GP whether you should have a screening chest X ray?

I guess at least you didn't buy the humira before you found out. I bought mine and then couldn't get a valid control result on the TB test so couldn't use it.

As to the LIT, apparently it can take a couple of days for the full reaction to show, and even if the skins signs are slight, its possible for it to produce a good increase in your LAD.

I'm pretty sure that Dr T said he DID test the donor DQa because he was talking to me about finding a suitable donor for my DQa but maybe procedures were stretched because so many ladies were having donor this week?

I hope everything works out for you.


----------



## mag108

Re Dr T and dq alphas...

This was my concern.
We all went in in rapid succession to get LIT tx done.
Mine was so fast I had hardly time to think! Dr T didnt seem aware of my issues/numbers. He asked 'what are you here for?' as is why was I there. I showed him my results that were provided when I booked and when I emailed. But that seemed to be his first awareness.

Not clear to me at all that Dr T and his reception team could have had the time to cross check, for example, my name with my donor. I must say I wasnt even convinced that he had separate donors for each of us! and how, with the rush and the chaos, did we all get 'individual' tx? with the relevant non matches....

I am not slagging off and I am going back but it was pretty chaotic and on reflection I am confused as to weather there is any attn paid to Dq's.

I too remember someone talking about this subject? Was it Shima?

X


----------



## mag108

Sarah...forgot to add I am sorry to hear that. It must feel like its such an uphill struggle. x


----------



## berry55

ok, now i am a bit freaked out about going for lit in athens!


----------



## Shim

Hi Ladies

Just saw all the posts about whether Dr T uses your Dq a numbers when getting a donor. I heard that too on Tuesday, but can't remember exactly where that came from. I certainly didnt have that conversation with Dr T. What he did tell me was that he didn't do double doses as per the Beer protocol, but that it was more than what Dr A gave. Much to my annoyance, as i have texted him several times to request this as well as donor pool  

I do however feel that it was all a bit rushed on Tuesday and how he remembered peoples Dqa, is beyond me. i really think it depends on what donors he has available as to what you get. But that's just my opinion. As you know, my numbers went down and i was in the same batch of LITs as Blonde1 and Cozy.

I have decided not to go back on the 26th as i am going to India at some point so i will have it there, i hope - Double dose both Donor (using my Dqa numbers) and paternal (just as insurance) - might as well as its only a 100quid!

Sarahh - i'm sorry to hear about your tb result. i also had a positive quantiferon blood test, and as i  had no symptoms (chest x-ray and other tests confirmed this), was diagnosed with latent tb. I saw a TB consultant and was put on a 3 month course of anti-tb drugs. As agate said, it is very rare to go from latent to active tb. Once you've got a positive result, you will always be positive, but the antibiotics should do the trick. 

Both my consultant, the beer clinic and the argc were fine with me taking Humira. In fact my consultant said i could take it after 6 weeks of starting the course, but i played it safe and waited till i finished. it just shouldn't be taken when pregnant. Not that it did me much good as my TNF number only went down from 39 to 35! The IVIG, IL and LIT worked much better - when i retested, it went from 35 to 16!. Obviously, its something you will need to make a decision on depending on what you feel comfortable with. Don't worry too much, you can get it sorted one way or another.

I think the best way to clear this up is to text/email Dr T and ask or perhaps one of you ladies could ask next you go.

sx


----------



## Ourturn

Shim - I will ask Dr T re the DQ Alpha match when I amd over on the 26th Jan

Sarah  
hopefully shim and agate have reassured you 

Anna x


----------



## Chicky Licky

Sarah - On the DQ alpha front with Dr T, I just thought it was you that had asked him! I didn't anyway. Sorry to hear about your sh**ty day. Sometimes it feels like one step forward, two back, but you'll get there in the end. Sending you a big  
Btw, my reaction is similar to yours - today, redness gone, no bumps and just looking very slightly bruised. Out of interest, what DQ Alpha numbers are you? Just wondering if you're the same as me and maybe we had the same donor.

Shim - glad to hear you've decided to go to India for LIT. Hopefully that will do the trick!  

Berry - try to stop worrying hun! I'm sure all is fine with the donor LIT. Dr Gorgy wouldn't send us out there if Dr T wasn't doing it right. That's what I'm trying to think until we know for sure. 

Anna - just saw you post as I'd finished typing mine. Good idea to check when you go on 26th. 

Shellie
xx


----------



## niccad

Hi all. Athens sounds like it was completely chaotic. I always heard that it was a rush there, but that he was really diligent about DQa. Perhaps he checked everyone before you went in & had a donor which didn't match any of you. Wierd thought potentially all having the same donor - but hey - another nice link on FF  

I'm now officially PUPO!! I'm still in shock that it's really happened and that i'm at home 'resting up', especially after being so pessimistic this cycle & having so few follies. Still hasn't quite sunk in that my 4 lonesome monster follies turned into 4 good embies. I am not the proud owner of 2 7-cell embies (one which they said is top quality!!!). So so lucky that i also have two for the freezer  
Let the madness begin. Question to all you pg ladies - were you on gestone and cyclogest? If so how many pessaries were you on and did you switch from the rear after ET? I have high CD19+5+ so on my natural FET cycle was on gestone (but then as it was natural my own body was producing some). this time the clinic were happy to give me gestone but really questioned me wanting cyclogest also... Would really love to hear your thoughts. I'm upping my pred from tomorrow to 40mg... just hoping that the appetite doesn't increase too much.

Big hugs to all & have a great weekend
nic xx


----------



## Chicky Licky

Nic - I can't answer your question but just wanted to say congrats on being PUPO!!!   

Shellie
xx


----------



## MissyMinx

Hi Ladies,

Congrats to Nic on being PUPO - sending your embies lots of snuggly vibes    

With regards to Dr T and the DQ Alpha testing, I wrote to him and said that I wanted to have donor LIT.  In the email I told him what my DH and my results were (we don't share a DQ Alpha match).  Dr T emailed me back to say why did I want Donor LIT when my DH would be the ideal partner for me.  I explained our situation (DH has just started a new job and in his 4 month probationary period, he is precluded from booking any time off and we're reluctant to delay our tx any further), Dr T told me he'd try to find a donor who was as close to my DH in HLA levels (whatever they are ) as possible.  I'll probably have one lot of Donor LIT, and then see about taking DH over for my second round in April, but then we have the nuisance of sorting all the tests out for him, so who knows.

I hope that helps a little bit though ladies.

Hello and   to you all.

Em.x


----------



## agate

niccad said:


> Let the madness begin. Question to all you pg ladies - were you on gestone and cyclogest? If so how many pessaries were you on and did you switch from the rear after ET? I have high CD19+5+ so on my natural FET cycle was on gestone (but then as it was natural my own body was producing some). this time the clinic were happy to give me gestone but really questioned me wanting cyclogest also... Would really love to hear your thoughts. I'm upping my pred from tomorrow to 40mg... just hoping that the appetite doesn't increase too much.


Congratulations Niccad!

I had cyclogest morning and afternoon (vag) and then gestone at bedtime - but Dr G said I could do them in any order so long as I stuck to the same each day.

I didn't up the pred though - stayed at 25mg.



MissyMinx said:


> Dr T told me he'd try to find a donor who was as close to my DH in HLA levels (whatever they are ) as possible.


DQa is a subtype of HLA so Dr T is saying he will try and find a donor who has the same DQa as your DH to try and make your donor LIT as close to a paternal match as possible.


----------



## ells

Yey Nic     congrats on being PUPO.  I have been told to do the same by Dr G, he said to use 2 pessaries but at the opposite time of day to the gestone injections.  Our clinic have also said to use the front door as it is better absorbed then when using the back door.  I hope this helps.  I am sure you will be fine on the pred at 40mg, you propbably wont notice a difference in your appetite until the pg hormones start kicking in sometime in the next 10-14 days     .

Hi to everyone else, hope you are all well.

SarahH Hun, hope you are okay and feeling better. On the humira, my cons said that if my tests came back positive for latent TB I could just have some antibiotics and then start the course.  It seems he uses it quite a bit for crohns patients so I guess he know what he's talking about   .

Athens sounds a llike a bit of a nightmare, so glad you ladies are all okay.

I had my first round of acu for this tx today - boy did the needle hurt my hand and foot -   .  my foot ached for about an hour later too -    I never had that so strong before.  She said it was to balance me out and that it would hurt if I needed help   .  I guess I need lots of help them   .

Right, need to pack my desk tidy!!!  And get home.

Ells


----------



## mag108

Nicaaad" congrats on being PUPO!...............x


----------



## Louiseb26

Big congrats to Nic...well done lovely  

Lou x


----------



## mag108

Just back from a day trip to London with Swinny, you would have thought looking at us that we were ladies who lunch, then that we were ladies who shop. But no, just an hous or two earlier we were ladies with our legs askance, having a Vvvvvvvery uncomfortable procedure aka uNK cell testing   . Almost kicked Dr G in the head.  

We did very well. Cant have an enormous glass of wine as a reward cos he gave us antib's.....

Conveyed to Dr G concerns re Dq alphas /Dr T.



xxxxxxxxxxxxxto you allllllllllllllllll


----------



## deegirl

Congratulations Nic hope this is your time.  

Mag and Swinny - lovely that we can really support each other on this rollercoaster of a journey.  Hearing about your day trip made me smile. 

Hi Ells - good to hear from you.  How often do you get acc?  I had been getting it twice a month (after a build up of sessions) but my dear accup had to have surgery so hopefully sessions will be resuming again soon, after her recovery.  It's so relaxing, I always booked it after work....bliss!  

Agate - always enjoy reading your posts, how do you know all this stuff??  

Berry - good to hear you've got things booked.  

SoBroody and Louise - hope you're both well.

Cozy - hope all is well with you and your precious cargo!  

Hi to everyone else

Dee x


----------



## berry55

hi girls, 

hope ur all doing ok. 

mag- that sounds very sore!! hope ur doing ok!  

My clinic in Glasgow who i will b having icsi with want me still to go on prednisolone and clexane, so i have been told to take 5mg of folic acid (i have been on this amount since my last tx in october) I just wanted to ask u all what u thought of this? If i needed the pred and clexane it would have showen in my immune results, isnt it? and my thought is not to take it all. Is there any vit's that i should b taking? I will b on humira, LIT and gestone. 

Thanks xxxxx


----------



## agate

berry55 said:


> My clinic in Glasgow who i will b having icsi with want me still to go on prednisolone and clexane, so i have been told to take 5mg of folic acid (i have been on this amount since my last tx in october) I just wanted to ask u all what u thought of this? If i needed the pred and clexane it would have showen in my immune results, isnt it? and my thought is not to take it all. Is there any vit's that i should b taking? I will b on humira, LIT and gestone.
> 
> Thanks xxxxx


1) what dose of pred and clex do they suggest and why? - if its low dose clex then I expect Dr G would say it won't do any harm. Has Dr G said why you don't need pred? I would think you would want to check the doses that Glasgow recommend and check w Dr G what he thinks

2) why 5mg folic acid? The 'normal' TTC dose is 400mcg (which is the dose in pregnancy vitamins like pregnacare) - 5mg is usually only suggested if you have something like **** MTHFR mutation or a family history of spina bifida - and if you did have these, then you'd probably need an extra dose of other B vits e.g, B6 and B12. The high dose folic acid shouldn't do you any harm short term, but you'd want to understand why you need it if you are going to take it longer term because folic acid supplements carry a SLIGHT increased risk of bowel cancer. Have you been told you need to take the higher dose all the time or could you drop it to 400 mcg and then then increase it when your Tx starts?

3) most ladies TTC take something like pregnacare/Tommy's to cover things like selenium and other trace minerals

4) think about taking high dose (e.g, 25 ug) Vit D unless you feel sure you get plenty of sun - Vit D deficiency can cause raised TNFa and, supposedly its common if you don't get out much/have dark skin/cover up/wear sunscreen - although the only way to be sure it to get your Vit D level measured e.g., at TDL - there is a campaign in scotland at the moment to try to get TTC ladies to take Vit D supplements to try and reduce scotland's rate of multiple sclerosis (the theory is that vit D deficiency is higher in scotland than down south because of less daylight).

5) some of us take omega 3 fish oil - although the studies on whether it does reduce TNFa are conflicting - it seems to in the short term but its less clear in the long term - but either way, if you get pregnant then your baby needs omega 3 so it seems safer to take it than not to

6) tumeric/curcumin tablets are supposed to be good for reducing TNFa


----------



## berry55

agate- thanks for the info again   My Glasgow clinic wanted me to take prednisolone & clexane as they said its the only 'immune' drugs that can help me to get preg.... even though there was no reason for me to be on them in the 1st place as i was never given any kind of test. I was on Prednisolone 20mg per day and 40(dont know what the units r) of clexane per day for my last tx in October. I still had a chemical preg and this is why i went for the immune tests. Dr Gorgy didn't mention Prednisolone or clexane to me, so i just understood that i wouldn't need it. Would he have told me now if i did need it? The reason why i have been on 5mg of folic acid is because my Glasgow clinic told me that because of the prednisolone i was to take a higher dose of folic as it can lead to a cleft lip in an unborn child, they told me the higher dose of folic would cancel this out. So now that i dont think i need the prednisolone, i thought maybe i shouldn't be on the high folic acid. Does this make sense? lol   xxxx


----------



## agate

berry55 said:


> agate- thanks for the info again  My Glasgow clinic wanted me to take prednisolone & clexane as they said its the only 'immune' drugs that can help me to get preg.... even though there was no reason for me to be on them in the 1st place as i was never given any kind of test. I was on Prednisolone 20mg per day and 40(dont know what the units r) of clexane per day for my last tx in October. I still had a chemical preg and this is why i went for the immune tests. Dr Gorgy didn't mention Prednisolone or clexane to me, so i just understood that i wouldn't need it. Would he have told me now if i did need it? The reason why i have been on 5mg of folic acid is because my Glasgow clinic told me that because of the prednisolone i was to take a higher dose of folic as it can lead to a cleft lip in an unborn child, they told me the higher dose of folic would cancel this out. So now that i dont think i need the prednisolone, i thought maybe i shouldn't be on the high folic acid. Does this make sense?


It makes sense, but I don't know the answer.

Prednisolone is often given as a 'first line' treatment for IVF failure on the assumption that it might be due to elevated NK cell activity (which you don't seem to have).

Clexane is often given on the assumption that IVF failure might be due to clotting issues.

The reason that your clinic say that they are the 'only immune drugs that can help' is basically because steroids and blood thinners have a lot more clinical evidence to support their effectiveness in infertility/miscarriage than humira/IVIG etc which are seen as either 'cutting edge' or 'fringe' depending on your point of view.

As you say, the tests don't seem to show that you have either of the problems that these 2 drugs are supposed to fix. From what I remember, Dr G has diagnosed you as having high TNFa, high CD19+5+ (antihormonal antibodies) and low LAD and is proposing to treat you with humira, extra progesterone (gestone) and LIT (for the low LAD).

Corticosteroids like pred are associated with a slight increased risk of cleft lip/palate and folic acid supplements are associated with a reduced risk - but I don't know if there is much evidence to show that one can be used to 'cancel out' the other. But anyway, if the ONLY reason you need the high dose folate is because of the pred and you are not on pred at the moment, I wouldn't have thought you need the high dose folate (but you should stay on a normal dose of folate though because you are TTC). Whether or not you you should take the pred (and the extra folate) and clex for your next cycle is something you should probably discuss with Dr G - partly because you don't want to annoy your Glasgow clinic - so you'd want a good reason for not doing what they tell you to. I am sure he doesn't think you need them because he would have told you, but whether he would be happy for you to take them if your clinic want you to is a slightly different question?


----------



## Peanuts

Hi girls

Berry - DrG has suggestted the same treatment for me - Humira, LIT & Gestone.  I asked him about Clexane & Pred, and he said he would prescribe those during treatment, so I'm assuming that would be the same for you - but best to call and ask him.

AFM - I seem to have been continuing with my 'head in the sand' syndrome at this time of year and only now beginning to think about what I need to do before I'm supposed to be starting txt in April.  Now don't think I'll have time to have Humira & LIT before that, especially as my DH doesn't like the idea of going to Athens for LIT and DrA is booked up til May!  

Could txt be a success without LIT?  My LAD results were:
Flowctometry    Negative
T-cells IgM+        1.8
T-cells IgG+        1.0
B-cells IgM+        17.6
B-cells IgG+          3.5

I've tried to email DrG tonight, but keep getting a bounce back from his email address ([email protected]).  Does anyone have another email address?
Thanks for your help
Dxx


----------



## berry55

Peanuts- thanks for the info. I dunno what i should do, i keep thinking... "why shoul di put drugs into my body if my body doesnt need them!?" and then the other part of me is thinking "maybe its better i do it all so that it covers everything" aaaaahhhhhhhhh i just dont know. As for the LIT.. i have no idea, i'm just doing it as Dr G told me 2 lol I have the same email as you for Dr Gorgy, but as far as i know he doesnt really respond to them so its prob best 2 phone him. xxx


----------



## Peanuts

Hi Berry

Kind of feeling the same as you, but had finally decided that we'll through everything at it this cycle, but now think that might be scuppered if I can't do LIT before April.  Dr G told me that DrA only neede 4 weeks notice, which is why I left it thinking that it would be fine to call up now and book!  DH really doesn't like the idea of Athens for LIT, but its looking like the only option - sounds so scary having to organise everything and get booked in - Have you booked flights, etc for Athens? 

I'll try to phone DrG tomorrow, but was trying to get it all down into an email to him as when I phone I seem to loose the ability to speak and forget all the things I was going to ask him!

Fancy meeting up for a chat?  I'll PM you
Dx


----------



## Saffa77

Hi ladies

A quick question re Gestone my CD 19+5 is 11.6 % it is just 1.6% over the limit of 10% -Should I really worry about taking gestone as the levels are not extremely high - can I just get away with a high dose of ultrogestan/cyclogest??

Sx


----------



## Cozy

Saffa,

if Dr G is recommending gestone, then personally I would have it, even though it is a pain in the  .. literally  .

If you dont want to have it, speak to him and see what he says

Cozy


----------



## agate

Peanuts said:


> DH really doesn't like the idea of Athens for LIT, but its looking like the only option - sounds so scary having to organise everything and get booked in - Have you booked flights, etc for Athens?


Hi - If you are going to do LIT - I'd really make the effort to go to Athens. The LIT that Dr A gives is not the same and it seems as though a lot of girls end up disappointed with Dr A's LIT and have to go to Athens in the end - its also really stressful to find out that Dr A's LIT hasn't worked in early pregnancy and then have to rush around trying to get to Athens to protect the pregnancy. It isn't difficult to get athens LIT booked especially if you are doing paternal LIT - its easier to get booked in because Dr T doesn't have to find you a donor. There isn't a big difference in costs because although you have extra travel costs to get to Athens compared to London, the LIT itself is cheaper and you can probably save on the screening tests because Dr T will allow you to reuse existing test results whereas Dr A wants all screening tests to be less than 30 days old - although you do need to go athens twice, whereas Dr A will only give one dose of LIT. It is easy to get from the airport to the clinic because the metro line from the airport goes right past the clinic and Athens is an easy city to be in - everything seems to be signposted in english. Overall, unless you live in London, I wouldn't think that a trip to athens is much more hassle/stressful than a trip to London.

Your IgG B cells are low which is why LIT has been suggested to you. Its possible that you don't need LIT and you would be able to stay pregnant without it as your body may be able to make the right antibodies when you get pregnant - unfortunately its something that you will never know - so you either decide to do 'everything possible including LIT' or you decide to leave it for now and see if the other treatment you try is enough.

I don't know whether this email is working [email protected]

good luck


----------



## berry55

agate- how would u know if Dr T has not been able to find you a donor? I'm worried incase this happens when we arrive at the clinic. My DH has not had any tests done for his blood we have decided that donor is the way to go for us due 2 our 4.1 match. 

XXXX


----------



## agate

berry55 said:


> agate- how would u know if Dr T has not been able to find you a donor? I'm worried incase this happens when we arrive at the clinic. My DH has not had any tests done for his blood we have decided that donor is the way to go for us due 2 our 4.1 match.
> 
> XXXX


If you are booked in for LIT with a donor and Dr T has confirmed this, then he must have a donor for you because he couldn't confirm your appt if he didn't have a donor in mind (although, if you are using donor to avoid a match - I assume he would just need to use ANY donor who doesn't match - so I would guess there would be a big choice of donors. Whereas, if you were trying to find a donor who had the same DQa as your DH (say, because you don't have a match but your DH can't travel with you - then there wouldn't be so many). But if you are not sure what has been agreed, then check with him - but don't stress about it - it will be fine! presumably you have sent him your DQas because he wouldn't be able to pick a donor (or confirm that he has one for you) without them?


----------



## berry55

ShellieG booked my appointment for me. Will he have to email me to confirm this appoitment? or will the fact that shellie has actually booked it for me mean that it has been confirmed... now i'm confused! lol


----------



## agate

berry55 said:


> ShellieG booked my appointment for me. Will he have to email me to confirm this appoitment? or will the fact that shellie has actually booked it for me mean that it has been confirmed... now i'm confused! lol


If he got your DQas from ShellieG and he confirmed it to ShellieG its booked - when he books it he writes you up in his book and it is booked. I don't think he would email you as well when he has already confirmed your booking to her.


----------



## berry55

awww ok... phew! i was worried there! xxxx


----------



## berry55

i just did my 1st humira... it was really sore... is that normal? i did it in my tummy.


----------



## agate

berry55 said:


> i just did my 1st humira... it was really sore... is that normal? i did it in my tummy.


I haven't used humira but they are supposed to sting. The clexane (also in the belly fat) sometimes stings so much I cry but other times I hardly feel it so maybe its like that and it won't hurt so much next time.


----------



## ells

Berry, it shouldnt sting for too long.  I have found that if you inject in at a steady pace not quickly its not so bad.  It may itch a little afterwards for a bit but I was told to keep a cotton bud on the injection site and gently rub for a few seconds after injecting (this helps disperse the fluid apparently) and it should make it better.   I am due my 3rd next Monday.  You'll get the hang of it.

Hi to everyone, hope you are all okay.

I have started up my acu again and managed to fall asleep today   and nearly fell off the bed when the door bell went   !!  

Anyway, hope you are all okay and have a good Monday.

Ells


----------



## MissyMinx

Hi Ladies,

Ells - you just made me   about almost falling off the bed.  I used to do the IVF Companion CD, and one time I dozed off.  It was literally simultaneously that the doorbell rang, the phone rang, my two dogs started going crazy and my mobile went off.  I thought I was going to go through the ceiling with shock.  I gave it away after that, as whenever I got to that point in the CD I started to giggle!

Hope the Humira injections get easier Berry - I've got to start mine in a few weeks, so I'll be interested to hear how you get on.

Hello and   to everyone.

Em.x


----------



## lalaby123

Niccad so chuffed for you that you got two good embies and two for the freezer. Now rest up and try to take it easy as much as possible and let's pray for at least one of them to cling on to mummy.

Agate - I didn't realise you had already had a baby! I have created a new topic for those who got pregnant with immune treatment. Would be great if you could join as we can benefit from your experience. 
http://www.fertilityfriends.co.uk/forum/index.php?topic=224269.0

Berry - hope the humira pain has worn off and hope it doesn't make you too unwell. Re pred and clexane i would do exactly what Dr G recommends. He might have not mentioned it as his way is one step at a time so because you have to have humira first he might not have mentioned that you will be on prednisolone during treatment but if he doesn't think you need that then I wouldn't take it as it is not the most pleasant drug and it has side effects which is better to avoid. However if you need it then you should take it as the benefits outweight the negatives. Same with Clexane.

Mag and Swinny - congrats on surviving the uterine biopsy ooooooooooooutch

Hi to everyone else, sorry too many to mention these days. I am glad some of you got to meet in Athens.

As for me my NK retest showed my Nk activity and my CD3 have flared up so I am having my 4th drip since got pregnant tomorrow but otherwise babies have survived so far.

xxx


----------



## agate

lalaby123 said:


> Agate - I didn't realise you had already had a baby! I have created a new topic for those who got pregnant with immune treatment. Would be great if you could join as we can benefit from your experience.
> http://www.fertilityfriends.co.uk/forum/index.php?topic=224269.0


erm, i think you are confusing me with someone else - this is the first time I've managed to get pg - am only 11w+5 pg. Am really worried about 12wk scan!!! Keep finding new things to worry about every week.



lalaby123 said:


> As for me my NK retest showed my Nk activity and my CD3 have flared up so I am having my 4th drip since got pregnant tomorrow but otherwise babies have survived so far.


am having my 4th drip since got pregnant as well (on wed) - because my CD19 has been flaring - if its not one thing, its another! 

Glad you are ok, Lalaby.


----------



## guccimama

Just bookmarking...interested in the subject and starting to research so finding this thread a great help..
Guccimama


----------



## Peanuts

Hi girls

Agate - thanks so much for the advice on LIT, made DH read it and will spend the rest of the week working on him!  Jsut trying to figure out if I've got enough time to get 2 lots of LIT before I start treatment in 2 months - somehow I don't think so.  Will have to see if I can postpone my cycle after harassing them to get my name back on the list!  COngrats on your pregnancy and hope the 12week scan goes well   

Berry - ouch, hope the stinging has stopped and your feeling ok after your injs.  Will be interested to know if you get any side effects, will need to do Humira as well.

Ells - i'm sure someone told me it was better to fall asleep during ACU as you're totally relaxed - although think you should put a 'do not disturb' sign on your door the next time!  

Lalaby - good luck for your drip tomorrow - seems to be doing the trick!    

Hello to everyone, will take a while to get to know everyone and what stage you are at.  

Off to explain LIT to DH again!!
Dxx


----------



## berry55

agate - i went and bought some vits 2day can u tell me if i got the right ones.... tumeric, pregnacare original & cod liver oil (i thinkthat 1 is wrong.) thanks  

Peanuts- did u get my PM lastnite?? xxx


----------



## agate

berry55 said:


> agate - i went and bought some vits 2day can u tell me if i got the right ones.... tumeric, pregnacare original & cod liver oil (i thinkthat 1 is wrong.) thanks
> 
> Peanuts- did u get my PM lastnite?? xxx


tumeric yes, pregnacare yes. cod liver oil - I don't think its safe for TTC - it should say that on the packet? The reason is that omega 3 fish oil is made from fish body tissue rather than fish liver. fish liver contains too much vitamin A for pregnant ladies (vitamin A in the form of beta carotene is ok (probably some of this in the pregnacare) because the body can process it and get rid of the excess, but vitamin A itself is not safe because your body might not be able to get rid of it fast enough). sorry, I should have been more specific. Hopefully the shop will let you swap it for some safe omega 3 fish body oil?



Peanuts said:


> Hi girls
> 
> Agate - thanks so much for the advice on LIT, made DH read it and will spend the rest of the week working on him! Jsut trying to figure out if I've got enough time to get 2 lots of LIT before I start treatment in 2 months - somehow I don't think so. Will have to see if I can postpone my cycle after harassing them to get my name back on the list! COngrats on your pregnancy and hope the 12week scan goes well


Thank you - you should have enough time to get the LIT sorted (unless you want to retest your LAD before you start your cycle - a lot of ladies cycle first and then retest if they get pg) - but you should have time to get in 2 doses 4 weeks apart before you start your Tx (you can shave it down to 2 doses 2 weeks apart but Dr T prefers a 4 week gap). If you are doing parental and you are getting any missing test results done at TDL you need to allow about 1 week to get the results back before you fly out (if you are getting them done on the NHS they could take longer - you'd need to check). You'd need to decide on whether you are ok to have parental (or donor) and get your DQa and LAD results to Dr T and book your appts. The most failsafe way to do this is to ask one of the ladies who are going out on 26 Jan to book your dates for you. 
good luck with whatever you decide to do.


----------



## sarahh

Hi all, haven't managed to get on all weekend - just wanted to pop on and say good luck to Blonde1 today      

Sarah x


----------



## berry55

blonde1- loads of luck for today!!!!!!!     xxxxxxx


----------



## MissyMinx

Best of luck to Blonde1. xxx  Sending you    

xx


----------



## berry55

hey girls,

I had my 1st hurmia yesterday and i feel not to bad. Just a little fluish now. But my AF has not showed up this month. I am never late and its really upsetting me. I did a test a few days ago but was neg, so i know that i'm not preg. Should i just stop worrying about it? The thing is i had a lot of pain this month suring my cycle, sort of stabbing pains and shooting pains, starting to wonder if a cyst developing.... am i just mad? 

Berry xxx


----------



## ells

Good luck Blonde1.

Ells


----------



## guccimama

Hello girls...well been reading...you are so knowledgeable on here cant believe how much i have learnt...or not will see if it sticks...
My consultant contacted me last night and says he would like me to take clexane, prednisone, baby asprin, Medrol, estrogen and progesterone support for my next cycle..I will be having FET on the 20th March..the day my baby would be due had i not had a miscarriage in september..so not sure if it is an omen.  
I am sure I will have lots of questions for you on here and hope you dont mind me posting..i am having tx abroad but you lots seem to be the most knowledgeable.
Guccimama


----------



## ratsy

Hi girls 

Just wanted to ask a couple of questions 

Does anyone know if Dr G  will def be doing LIT  this yr , dp hasnt got an up to date passport and didnt really want to update it if we dont have to go to greece it will be just waste of money 

A question for agate  or cath i saw on caths post on pregnant with immunes that she has high unk cells but didnt have to have humira could you explain why didnt need it  please 

Last one how do you pronounce LIT and IVIG  is it seperate letters or one word if that makes sense i sound dead thick now    just didnt want to go to my appointment and ask questions and Dr G like oh my word shes making her own names up now   

R xx


----------



## niccad

Hi Ratsy - I say them both saying all the letters and DrG seems to understand. Saying that I'm sure he said LIT as one word before. IVIG is definitely the letters.. I asked if he was starting LIT and he confirmed it, but I didn't ask re timing. Oddly enough he also gave me the impression he'd be able to do donor LIT!

Blonde1 -   for you

x


----------



## ratsy

Thanks niccad 

Its all so new and dont want to look a fool if you know what i mean  

That would be brilliant if hes doing both i live in wales so nightmare trek for me to greece .the 3hrs to london and then on to athens but if ive got to go to athens i will it would just be alot easier to just travel to london .

The girls on here have been brilliant and really kind sharing there well earned knowledge  

R xx


----------



## ells

Hi Ratsy, I am no expert but I believe LIT is said as the word and IVIG is said using the letters. I  am sure someone will be on to correct me if I am wrong.   .

Niccard, how are you hunni?  how are you feeling?  keeping     I hope.  

On the LIT it would be great if Dr G would start it up, but I have a feeling I have read that donor LIT is illegal in the country    - Agate is this correct?

How is everyone else?

Guccimama, welcome to the thread.  Sorry to read about your loss.  I am sure that the ladies on this thread will be able to support and answer your questions - they are real Guru's on the subject   .

Ells


----------



## agate

ells said:


> On the LIT it would be great if Dr G would start it up, but I have a feeling I have read that donor LIT is illegal in the country  - Agate is this correct?


I don't THINK its is illegal in the UK - but I don't know for sure. On another post someone said it was illegal, but when I queried whether that was true I didn't get a response. The reason I don't think it can be illegal is a) if paternal LIT is legal, how would the law distinguish between paternal and donor and b) if it is legal to give IV donor lymphocytes to cancer sufferers (which is a therapy used in the NHS), how could the law distinguish between that and subdermal donor lymphocytes - ie. LIT?


----------



## ells

That does make sense Agate.  It would certainly make everyone's life easier if we didnt have to go to Athens or struggle getting appointments etc with PA.  

Agate, how are you feeling?  You are almost 12 weeks now, milestone celebration time!

Ells


----------



## agate

ells said:


> Agate, how are you feeling? You are almost 12 weeks now, milestone celebration time!


Really worried about the 12 week scan on friday - I will be so relieved if we get through it ok but waiting for it is torture as I keep convincing myself that something is wrong. If we get through it though, we will definitely be celebrating on friday.


----------



## ells

Agate     hunni after everything you have gone through to get this far I am sure that worrying is only natural.  I am sure everything will be good and you will be celebrating Friday.  Keep positive sweetie,     .

I'll be thinking of you   .

Ells


----------



## Peanuts

Hi girls

Agate, thanks again for the advice.  Think I've managed to persuade DH and hoping to go for LIT in Feb & March and then start stimming  in April, if I can put my clinic off for a month.  Will post on the LIT board to see if someone can book me in.  DrG said we'd be ok for parental which is why he suggested DrA, but then he said he only needed 4 weeks notice before getting an appt!!  .  I'm in London next week with work, so have booked to see DrG and talk through things with him.  Good luck for Friday - will be thinking about you  

Blonde - any news hun?  Keeping everything crossed for you     

Ratsy - hi hun, how you doing?  I'm seeing DrG next week so will ask him about if and when he's going to start LIT.  Good luck with your appt - when you going?

Berry - hope AF turns up soon, and you start to get over the fluish feelings.  Looks like we might be LIT buddies!!

Big hugs to everyone
Dxx


----------



## agate

berry55 said:


> my AF has not showed up this month. I am never late and its really upsetting me. I did a test a few days ago but was neg, so i know that i'm not preg. Should i just stop worrying about it? The thing is i had a lot of pain this month suring my cycle, sort of stabbing pains and shooting pains, starting to wonder if a cyst developing.... am i just mad?


Berry - I don't know for sure, but I think its unlikely that something is wrong. cysts don't usually cause pain and it would normally take longer than 1 cycle for them to develop into something that could cause pain. How late are you? you should definitely keep testing every few days though just in case. that said, I never had regular cycles so its easy for me to assume that being early or late is pretty normal. Have you come off/gone onto any medication or gained any weight recently because that could affect your cycles? If you get more pain or if your AF is very delayed perhaps you should see your GP?


----------



## berry55

my AF arrived this evening.... thank god. I was so scared something was wrong with me. so thats all good. 

Agate- thanks for the advice once again! I'm telling you, you should become a personal advice giver lol you know so so so much things!!!  

Peanuts- we still on for thursday night? Dr G told me i was ok for parental LIT but as we have the 4.1 match and we r going all the way 2 athens i thought what they heck, lets just do it the best way for us. I think this may be my last try. Anyhooo, we can chat properly on thursday night... just need a time that suits you. xxxx


----------



## ratsy

Agate -I think you be fine on friday   I wish you all the luck in the world your always here for all of us with your advice and help and now were all here for you to support you and to try and help you .Not that youl need it coz eveything going to be fine on friday and youl see youve been worrying for nothing  

peanuts - thanks for that it will help me loads to know in advance .my appointment march 8th but im trying to get enough info to know what im talking about when i get there  

R x


----------



## Ourturn

Agate - good luck for Friday, I'm sure everything will be fine!  

Blonde1 - hope you are ok  

Berry - I sometimes get af type pains, 12 days before af arrives

Peanuts - I've posted on the lit thread re sorting your appointment out.

Hi everyone - had my down regging shot today...hot flushes, night sweats and mood swings here we come!

Anna x


----------



## jej

Just wondering if anyone can help me - 
I had a telephone consult with Dr Gorgy today and was asked to email him my results but I must have wrote down the wrong email address and it keeps bouncing back. There is no email adress on his website, if anyone know's the correct address could they please let me know. Thanks x


----------



## MissyMinx

Hi Jej,

I think it's [email protected]

Best of luck.

This post contains an unconfirmed link/information and readers are reminded that fertilityfriends.co.uk or its owners are not responsible for the content of external internet sites

Em.x


----------



## jej

Thanks a mil - you saved me x


----------



## MissyMinx

You're welcome Jej - best of luck.  Have blown you some bubbles - keep us posted as to how you get on, Dr G is fab!

Em.x


----------



## berry55

berry55 said:


> berry55 said:
> 
> 
> 
> DQ ALPA GENOTYPE
> 
> My Hubbys - 0501.0505
> Mine - 0104/0105.0505
> 
> TH1:TH2 intacellular cytokine ratios
> 
> TNF-a:IL-10 (CD3 +CD4+) 57.6
> IFN-g:IL-10 (CD3+CD4+) 17.2
> 
> IMMUNOLOGY
> 
> Quantiferon- TB GOLD TEST - NEGATIVE (Neg = <0.35)
> 
> NK ASSAY (% KILLED)
> Name Result
> 50:1 13.5
> 25:1 9.0
> 12.5:1 6.5
> IgG conc 12.5 50:1 6.5
> IgG conc 12.5 25:1 5.7
> IgG conc 6.25 50:1 4.6
> IgG conc 6.25 25:1 3.4
> % CD3 83.6
> %CD 19 4.8
> %CD 56 9.6
> % of CD19+ cells, CD5+ 35.4
> 
> **notes > 10% reduction in killing at each effector/target ratio.
> 
> LEUKOCYTE ANTIBODY DETECTION
> 
> Flowcytomerty NEGATIVE
> (T-Cells) IgM+ 2.8
> (T-Cells) IgG+ 2.6
> (B-Cells) IgM+ 28.6
> (B-Cells) IgG+ 23.3
> 
> NK ASSAY W/ INTRALIPID
> 
> 50:1 w/ Intralipid 1.5mg/ml	6.9
> 25:1 w/ Intralipid 1.5 mg/ml	3.8
> 
> HEEELLLLPPP MEEEE PLEASE!!!!!!!
> 
> 
> 
> Hi girls, Could some1 tell me if Dr G should have prescribed me for IVIG aswell as humira?? I have just been told i should have Humira, but i was reading some other posts and some other girls have been prescribed IVIG aswell as humira... why is this?? Sorry if this is a really dumb qn.
> 
> Also, i have my 1st humira injection on monday... i feel normal... is that normal.. lol
> 
> xxxx
Click to expand...


----------



## niccad

Hi Berry - we're all prescribed different things dependant on our own results. IVIG is usually used if you have high NK cells - and is meant to be especially good for CD56. Your NKs are all fine with the exception of CD19+5+ and gestone is used for that one. IVIG does seem to help with TNFa too, but hopefully the humira will do the job here. I would trust in what DrG has suggested...  and save yourself the £1350 it costs for each IVIG drip. I didn't take humira so am not sure what side effects/if any you should have... Good luck x


----------



## Zeka

Berry - I didn't have any side effects from Humira. Maybe I felt a little sleepy on a couple of days but that cld have just been down to a busy week. My levels went down from 57 to 30 after 4 shots.


----------



## berry55

niccad - thanks for the reply. I will take ur advice and trust Dr G xxxx

Zeka- Thanks for ur reply too. Your levels r the same as mine!! I hope mine goes down too.... i'll just need to hope. Did Dr G make u do a re-test after the 1st 2 injections?? If so did u have to do the retest b4 he gave u the prescription for the nxt 2 injections?? xxxx


----------



## bubbles09

Hello ladies

Sorry to gatecrash but I just have a bit of  a silly question. We went for immune testing with Dr Gorgy this week and he said to call back in 10-14 days to make an appointment for the results. Would that be 10-14 working days or just 10-14 days.

Sending loads of   and   to you all.

Love bubbles09 xxx


----------



## niccad

hi bubbles and welcome. It usually takes 2 weeks for the results to come back (14 normal days). The best thing is to call after 2 weeks and ask if the results are back. If they are then ask for a copy to be faxed to you so that you can get your head around the results before you have your follow up consultation with DrG.. 
good luck xx


----------



## bubbles09

Hi Niccad

Thanks hun.. Best of luck to you    

xxx


----------



## ells

Morning ladies,

Nic hi hunni, how are you?

Berry I am due my 3rd Humira shot on Monday and the only side effects I have had have been sleepy, flu type symptoms for a couple of days and achy knees again only for a couple of days.  I am having both IVIg and IL as I have high NK's and Dr G wanted to get them down to normal levels.  

Sobroody, the things we have to put up with   .  Hopefully you wont feel too bad.

Agate, how are you hunni.    I hope everything goes well tomorrow and we can have a little party on here.  

Lalaby hunni, how are you?  You are hitting some good milestones now.

Welcome to the thread Bubbles.#

Anyone going to Dr G on 9th Feb?  I have a appointment at 11am as need to see what I need to do when and get my TNF re checked.

Ells


----------



## berry55

ells- did u have to get ur bloods taken for TNFa after ur 2nd humira?? Dr G told me i needed 4 injections but only prescribed me 2... so i take it i need to retest? what was ur TNFa level? mine is 57.6 xxx


----------



## niccad

Agate - will be thinking of you tomorrow xxxxxxxxxxxxxxxx

Ells - hurty knees don't sound so nice. When does your cycle start?
I'm ok thanks - this 2ww is so hard. It all feels very surreal and I'm just in complete limbo. I'm also absolutely dreading testing - so much riding on a little stick...  

x


----------



## Ourturn

Niccad - 2ww is torture 

Ells, Berry - I've gotten of VERY lightly with humira...had my 2nd shot 2 days ago...no side effects! 

Agate - good luck for tomorrow    

Anna x


----------



## rosebud_05_99

HI 

I recently had a phone consult with Dr G because I needed a prescription for intralipids, he told me 40mg clexane instead of heparin i had previously been on , i forgot to ask is that every 12hrs the same as herparin or is it once daily.

thanks for any help

rosebud


----------



## niccad

Hi Rosebud - clexane is once a day - I was told that it was best to do the injection first thing in the morning so that if they need to test to see how you're reacting they can (the test is exactly 2 hours after injecting)... 
x


----------



## Chicky Licky

Hi Nicad

Good luck on the 2ww - I've got everything crossed for you! 

On the clexane - what's this about testing 2 hours after injecting to see if you get a reaction to it? 

I was assuming that I would do the injection myself at home - but who needs to do the reaction test after then? Is this just done after the first time you do the injection? Sorry for all the questions but this will be my first time using Clexane. 

I don't live near London for Dr G to do it and the clinic I'm cycling with is in the Czech Republic! I don't think my GP will help either as she fobs me off with her favourite line that I'm private now! 

Shellie
xx


----------



## niccad

Hi Shelly - Don't worry - you don't need to test afterwards... only if there is an issue. During my last treatment my injection site wouldn't stop bleeding. It wasn't pumping out or anything, but it carried on for over 24 hours. DrG asked me to go back to test and see if my body was over-reacting to the clexane... hence a test 2 hours after. 
At the time DrG said that I was a really rare case (he even had to look up the name of the test) so sorry for panicking you xxxx


----------



## Louiseb26

Hiya Ladies

Agate - All the best for tomorrow...looking forward to hearing your news lovely  

Niccad - Why cant they put us to sleep for 2 weeks   Stay strong Hun  


Hope everyone is doing ok  

Lou xx


----------



## ells

Hi Berry, I cant remember off the top of my head but it was something like 39.7.  He told me I would probably need 4 injections and to test after my last one but because I am having the Humira for my crohns I am only having 3 injections.  I have a feeling that he may be asking you to retest after 2 to see how you are responding to it.  I wouldnt worry about it hun.  Its all normal.

Niccard, it really does feel like our lives are on hold for a little stick!!  When is your OTD, is it this week? (sorry hun cant remember   ) .  Knees have stopped hurting now but they were really painful when walking up and down stairs in particular, still get the odd twinge.

Anna, my side effects werent too bad, I was dreading getting head aches but I think I got off quite lightly.  I had 2 injections a day apart (I know its not the normal protocol but it was my crohns doc that did it that way).  I am hoping that 3 will be enough and I wont need another one.  I have to have the IVIG and IL combo so hopefully that will keep everything in check!

Zeka, how are you hunni?

Hi Lou, how are you doing?

Hope everyone else is okay.

Ells


----------



## Louiseb26

Hiya Ells,I'm very well thank you.
I think I'm starting to get my head round all this immune stuff...not yet up to everyone else's standard tho   Had my first Humira injection on Tuesday...which made me feel a bit sickie for the day,but feel fine now.

Looks like you have been ok on it.How do you feel now? Glad to see your knees have stopped hurting...cant be easy having to do it all together  

Lou xx


----------



## ells

Hi Lou,

I feel okay just tired but I am not sure if thats from the Humira or my immuno suppresants   .  I am far from being an expert with all this immune tx but do feel I understand it all much better now.  I am just sooooo glad I found out about it all.  I know when reading the Beer bible I was in tears as the stories are so like mine but they were tears of relief.  Without having had these immune tests I would never have finially got my crohns diagnosis.  Plus it has made me feel more confident with having tx this time but I still worry.  I guess its only natural.  How many jabs do you have to do? 

Niccard, I am hoping to be able to start with next AF which should be here Sat - but you know what happens when you are waiting for the witch   !!  My tum has been all over the place the last couple of days so I thought, must be about to start but nothing yet.  Might ask my acu lady tomorrow if she can tell anything from my pulse   .  I think I then start DRing on day 21.  I have to have my set up meeting first, I have to ring the clinic on CD 1 and they book me in for my meeting.  I hope I have before we go up and see Dr G so that I can get it all sorted out with what I have to do when etc. 

Ells


----------



## berry55

ells - thanks for the reply. xxx


----------



## Louiseb26

Ells,i to am glad i found out about all this immune stuff now.I dread to think how much money we would of spent if we would of carried on being told it was just bad luck   
The ladies on here are so good at answering any questions...there brilliant.I feel the same about my tx this time...more positive.I'm only having 2 Humira injections...going to do the other one in 2 weeks time,then I'm off for my 2nd LIT on the 9th Feb.I want to wait 3-4 weeks before i go back to see Dr G to retest.I'm   my levels are all ok for me to start my tx.

Lou xx


----------



## ells

No probs Berry.

Lou, fingers and toes crossed for your results hunni.  I hope your second injection goes okay.   

Ells


----------



## ratsy

Goodluck agate for tommorow   

R xx


----------



## Zeka

Berry - I had mine done whilst at the argc. Yes, they do test you after 2 shots before prescribing again. My levels had gone down by June...but back up again by October. Dr G treated me with intralipids this iui cycle instead of doing the Humira thing but I suspect I'll be back on it as soon as I do ivf again.

...test day is tomorrow but can't say I am holding out much hope for it seeing as DH's sample was >92% abnormal morph.    Considerably worse than ever before despite being VERY clean living for months and months   

Zeka x


----------



## ells

Zeka hope you have some good news today hunni      .

Agate, thinking of you today sweetie.  Hope the scan goes well.      

Ells


----------



## Ourturn

Zeka - good luck


----------



## guccimama

just wanted to pop on and wish Zeka good luck..
Gucci


----------



## rosebud_05_99

hi 

Thanks for the info on clexane, is it injected in the stomach, also what is the drug Humira for?

rosebud


----------



## agate

rosebud_05_99 said:


> hi
> 
> Thanks for the info on clexane, is it injected in the stomach, also what is the drug Humira for?
> 
> rosebud


yes clexane goes into the belly flab. 
humira is used to try to lower TNFa ratios.

Ladies: thanks for all your goodwill messages - sorry I haven't been responding - my mind has been too far gone. It has been a horrible week (due to non TTC stuff which has had me feeling utterly hopeless, and another bleed on wednesday night which was frightening)... I don't get the nuchal scan results until at least wed when the bloods are back (because we live in the sticks so bloods have to be sent away), but from what I could see on the screen, everything looked ok... at least the nuchal measurements that were being shown on the screen were all about 1mm (which is low risk) - although the sonographer said they weren't meaningful without the blood tests because bad bloods could override a good nuchal measurement - and I could see the baby's heartbeat and see its arms and legs waving around, and the baby 'jumping up and down' on the screen. The sonographer said that it was a very wriggly baby and that was a healthy sign. I asked whether she could see anything that would explain the bleed but she couldn't see anything obvious. I had the bloods taken without throwing up. I feel fairly relieved, exhausted and bit sore from the poking in the belly. I was in tears before, during and after the scan and bloods. I am confident that we have been hearing the baby's HB properly on the doppler at home because a) its very clear and distinct when you get it in the right place b) the heart rate is so obviously much faster than mine (and mine is very fast!) c) the sonographer found the baby in exactly the same spot on my belly as DH had marked a cross to show where we were finding the HB. This is despite both the midwives insisting that home dopplers are too difficult for 'ordinary public' to use. I finally got to speak to Dr G who said it was time to gradually come off the pred, progesterones and metformin and to keep the clexane down at 20 until a week after all the spotting has stopped then go back up to 40. He recommended I see for a scan in a couple of weeks and to get my NKs run again in 10 days time. But basically, its still rest and stay calm to try and stop the bleeding (now spotting, fingers crossed).

good luck Zeka!

I have to try and rest now.


----------



## Ourturn

Agate - sorry about the scary bleed   But great news that the baby looks OK!   See you Tuesday in Athens 
Annna x


----------



## Donkey

Anna and agate
DH and I are in athens on tuesday too, flying monday night and staying at the athens gate hotel.  Are you both doing it in a day or staying?

I'm very excited and nervous but I truly believe this is the wy forward.

donkey xxx


----------



## lalaby123

Agate - I didn't know you were having nuchal scan I thought it was just the 12 week scan. Glad you saw the baby and its great when they wiggle about for you  I am sure your results will be fine if the nuchal thing was 1 mm. Its horrible waiting for the blood results though I was lucky got the results there and then. If they couldnt find any blood clots then hopefully you have bled out whatever that was there. 

Zeka - good luck     

Niccad - hope you are surviving the 2ww sending you lots of      

love to everyone else, I have survived to 14 weeks, still suffering from headaches since weaning off steroids. hope its not forever. weaning off progesterone now ....already feel more normal

xxx


----------



## Louiseb26

Agate - So pleased the scan went well.Glad you and the baby are ok.Get loads of rest lovely  

Hi Lalaby123 - Those steroids give horrible headaches don't they.Take it easy...hope your getting a nice bump Hun  

Lou xx


----------



## Zeka

Ah Agate, how wonderful to see your little one wriggling around and that all looked well on the scan  

...BFN for us as expected. I'm not emotional about it at all (for once!) thankfully as it was well and truely expected. I also got a 3 month work contract today so I let myself enjoy that good news moment instead and had a glass a champagne to celebrate!
Thank you all for your good luck wishes today, what a lovely bunch you are   

Zeka x


----------



## rosebud_05_99

Hi 

I was also wondering how intralipids wiork, as dr g has me having them 10days before transfer then one 2 days before transfer but no more until a positive test result. Is this the standard protocol?

Thanks

Rosebud


----------



## agate

Zeka - I'm so sorry.  We never tried IUI because we were told we would have nil chance without ICSI.  I understand IVF/ICSI has a higher success rate though (although it costs more).  What's the plan next, more IUIs or another ICSI?


Rosebud: yes, that's a fairly standard protocol.  Dr G does tend to do 2 drips before you get to ET.  Sometimes he does one IVIG and one IL but I guess sometimes he does 2 ILs.  They have to be started 7-14 days before ET in order to get enough effect on your NKs and TNFa to start to calm things down to get a more hospitable environment to put the embryo back into.  They last for up to a month in your system which is why its ok then to wait until you've had your beta test(s).  Most ladies race up to London to get their drip asap if they get a positive beta.  Then after that, its a question of retesting your NKs 7-10 days after your drip and waiting to see what Dr G suggests in terms of further drips and tests.


----------



## rosebud_05_99

agate

thank you for all that info, I just had a quick phone consult with dr g and then im doing treatment with reprofit abroad and its tough finding out all the info when working between two consultants. Im in Ireland so I will be getting my infusions at Dublin. Its a lot of organising, if my next cycle dosnt work out either with the intralipids i will then go over to dr g for more tests. Thank you again

rosebud


----------



## mag108

agate: you poor thing. I am really glad that the tests so far seem ok. sending you a big hug. It is such a worry having a bleed but really, what your sonongrapher sees sounds very very good, heartbeats and wriggles. The bleed could just be hormonal.
XX


----------



## Peanuts

Hi girls

Agate - oh hun, so pleased to here that you and baby are doing well and wriggling about.  Will be keeping everything crossed for your blood results        DH must be a whizz with your home doppler - well done him!  hope you're able to take it easy and be looked after and enjoy the rest of your prg  

Zeka - sorry to hear about your BFN    take care of yourself as it may hit you a bit later on.  Glad you had some good news on the same day to keep your chin up  

I'd just got used to the idea of having a plan for next txt cycle, and organised LIT, etc (thanks again Sobroody!), than finally got some final blood results back - my TB test has come back as Indeterminate again (2nd time), and I've tested positive for heterozygous MTHFR!  Really knocked me for 6 last night!   

If I keep getting this TB result does that mean I can't have the Humira DrG suggested?  Is there an alternative?
I've seen some discussion on other threads on the impact of MTHFR - on whether high does Folic acid & B vitamins are needed, any thoughts?  Would I just need these during treatment and hopefully prg or need to take it forever?

Heads all over the place again! 
Dxx


----------



## agate

Peanuts

have pm'd you about the TB result - its nothing to panic about.

MTHFR hetero is absolutely no big deal.  More than half the UK population have one or other of the MTHFR mutations.  

Dr G will probably prescribe some low dose clexane to start about day 5/6/7 of your stims - probably 20mg before EC and 40mg after EC (you stop the day before EC and restart afterwards to avoid any bleeding risk with the EC).  You might want to buy some calcium tabs because clexane can knock out some of your calcium (its less of an issue if you are only on a low dose - but if you do get pg you will be on it for a long time, so you'd probably want to start some calcium supps at some point).  If you buy calcium tabs then the calcium citrate ones are more expensive than the calcium carbonate ones (but they are less likely to make you constipated - which can be an issue when you are cycling because the gestone and pessaries also make you constipated). 

Dr G will probably say that the standard dose of 400 mcg folic acid is enough without worrying too much about other B vits as long as your diet is healthy (most of us take something like pregnacare just in case - which already has the 400 mcg folic acid in it).  If it was MTHFR ****, the clexane would be higher and you would need high dose folic acid (plus B6 and B12) but hetero is not a big deal.   The hetero mutation doesn't carry any health risks (strokes etc) so long as your diet is sensible because it only becomes a risk factor if you have high homocysteine levels (usually from low folic acid intake), so you probably won't need to take any extra folic acid when you are finished TTC (you have to balance the risk of not taking it with the slight increased risk of bowel cancer that comes with taking it - natural folate in your diet is better for you than synthetic folic acid supplements because natural folate don't give any extra risk of bowel cancer) but you should keep taking 400 mcg folic acid all the time you are TTC/in between cycles.

Just got told off by DH for not having my feet up (after a bit more spotting this morning).


----------



## Peanuts

Agate

Thanks so much for getting back to me and your PM.  You know so much of all of this process and all the complications and interactions that have been confusing me since about November!  

Now get back to the sofa and get your feet up  
Hope everything settles down soon  
Dxx


----------



## Donkey

Zeka, so sorry to hear of your bfn   and it's very strong of you to concentrate on the positive news.  

Agate you must look after yourself..I hope the bleed is nothing to worry about.

Having a bad weekend, one of my beloved cats is dying and has to be put down on Monday just before we fly to Athens for LIT  

Look after yourselves, lots of love
xxxx


----------



## Saffa77

agate

thanks for the good info re MHTFR hetero i am also hetero but also am positive for factor III Leiden.  I am confused as I have read ladies suggest taking 5mg folic acid and vit B6 and B12 I believe this is more common with **** but what if I have my hetero and Factor III leiden which dose should I then take? Is pregnacare enough?

Sx


----------



## agate

Factor VIII leiden or Factor V Leiden?  I haven't heard of Factor III

Well, in either case, I don't know the answer.  I can only guess.  

You can always try searching on the yahoo reproductive immunology thread to see if you can get something more definitive.

I would GUESS that the Factor V leiden mutations only need treating with clexane (and baby aspirin?) (although clotting issues would be exacerbated by high cysteine levels so it being folate deficient would be a bad idea - and having a good diet with plenty of natural folate will be important) so I would GUESS that you shouldn't need high dose folate only the regular 400 mcg in pregnacare (same as the hetero MTHFR) - hasn't Dr G given you feedback on those test results and his recommendations for this?


----------



## Saffa77

LOL agate sorry factor V leiden..... dont know what I was thinking in typing III

Ok thanks for the info - when I spoke to Dr Gorgy he just told me to take folic acid didnt say the strength, I will also be on aspirin and clexane on top - so think Im going to stick to my pregnacare only then as Have been taking 5mg with Vit B6 and B12 dont want to take things unecessarily.

Thanks ladies

Soniax


----------



## agate

am sure the higher dose won't do you any harm - and generally if you take the higher dose you'd need the extra B12 and B6 to absorb the extra folic acid.

someone on another thread said that they were told to take the higher dose when they were taking prednisolone (because prednisolone carries a slight increased risk of cleft palate, whereas taking folic acid is protective against cleft palate - but I don't know think there are any proper guidelines that say you need high dose folic acid when you are taking prednisolone though) - I didn't take the higher dose though - Dr G said I didn't need to as I am only MTHFR hetero - I just took pregnacare/Tommys

like I say, I'm guessing here because of the V leiden - so maybe you should check in with Dr G again before you cycle - but definitely don't stop taking at least 400mcg in the meantime.


----------



## ells

Hi ladies, 

Agate  on the scan!  I hope that thats the last scare you have hunni.  Hopefully your blood results come back quickly.  I hope that you have a better week as it sounds as if it hasnt been too good hunni       .

Peanuts     , sorry about your cat.  Its horrible when you have to do these things.  have fun in Athens.

Lalaby, have you started to get a bump yet?

Niccard, how are you doing hun.  I hope you are not going too   , the last few days are a bit tough.

Zeka, sorry about the BFN hunni   but congrats on the job   .

Lou, how are you doing?

Deegirl, how are you hunni?

Mags, hope you are okay hun.

Hi to everyone else, hope you are all okay and enjoying the weekend. 

Well, AF arrived Saturday in full flow - thats to my acu lady - fab!!!  So I am now waiting for the clinic to phone me back to let me know when my set up appointment will be - hopefully I'll have that before we see Dr G on 8th or 9th Feb.

Ells


----------



## Ourturn

Donks- I'm doing Athens in one day again. 

Lallaby - 14 weeks wow! That's brilliant  

Hi ladies

After my 3rd mc 2.5 years ago my nhs consultant put me on high does folic acid & baby aspirin as a precaution. For the past couple of years I've had a fair bit of hair loss which I thought was to do with pg hormones and ivf drugs. Now I realise its because I was not taking additional b-vits (just what was in my Zita West vit). I have been on the the b-vits  for a couple of months and my hair around my temples has started growing back slightly   Hopefully it will re grow. I think the lack of B vit absorption was causing my hair loss. I am MTFHR + hetero but will continue on the high dose.

Oh Holland and Barratt have a buy one get one half price offer on.....so I've stocked up. They sell tumeric capsules and vit d which are supposed to be good for lowering NK's. Anyone else taking these? Also trying to drink beetroot juice daily. Mixing in some tomato juice as well...the things we do ehh!

Anna x


----------



## agate

I take vit D 25 ug to try and balance my immunes (and because I don't go out much so the immunologist told me I would probably need it).  I took tumeric until I got the BFP then I stopped - although I still try and put it in cooking.  Before the BFP I was trying to drink green tea (even though I don't like it and now the smell of it makes me feel sick) and nettle tea, since then I've switched to drinking mainly watered down pomegranate juice (to reduce TNFa) during the day and milk at night.  During stimms and 2ww I was drinking lots of skimmed milk for the protein.  I bought tomato juice but found it hard to stomach so I'm gradually using it up by putting it in cooking.


----------



## Newday

is tomatoe juice and pomegranet juice good then?


----------



## Seven

Hi,  does anyone know where Dr G does his egg collection and embryology if you do ivf with him?


----------



## Ourturn

Newday - yes. M & S do fresh pomegranate juice which I find yummy. 
Agate - I love tomatoe juice...met dh over a blood mary when skiing   I have vigin marys now of course
Seven -sorry don't know

Anna x


----------



## Peanuts

Hi girls

Donkey - so sorry to hear about your cat hun     Hope you're doing ok 

sobroody - need to get my flights booked for Athens - what flights do you take to get there and back in a day?  Will we need to be there ealier if we're having parental LIT?  Good luck with your trip.  Thanks for the tip about Holland & Barret - will need to get down there to stock up!

Ells - it was Donkey who has a poorly cat, not me.  Don't think my dog would cope with a cat in the house!  Glad that AF has shown her face and you can get stared with txt 

agate - how you doing hun, hope you've still got your feet up! 

Have calmed down a bit after my results on Fri, thanks to all the great help and advice from you girls - thanks so much.  Just need to write a long list of questions for DrG on Tuesday!
Take care
Dx


----------



## ells

Sorry Peanuts   .  I hope you can get the TB stuff sorted out   

Donkey, I hope that you are okay on Monday, these things are awful to do.    
I hope that you sort your flights out to Athens too. 

Hope everyone else is okay.

Ells


----------



## mag108

safe journey to all going to Athens .....x


----------



## Queenie13

Hi Seven
Dr G uses The London Womens Clinic at 113 & 115 Harley Street for tx.  Its about a 5 minute walk from his office.
Queenie


----------



## niccad

Ells – OTD is this Thursday although I know I could test tomorrow and get an accurate result…. Going to hold off though as DH is away tomorrow and Wednesday night… Great news on AF coming and your cycle starting… that BFP is just around the corner for you x  

Louise – how are you feeling on the humira? Any side effects?

Agate – great news about the scan and I hope that the bloods come back really soon – waiting is so painful. I hope that you’re really taking it easy xx

Donkey & Anna – I hope that Athens goes well tomorrow… Donkey – so sorry to hear about your cat   . Just when you think you can’t cope with the amount you already are dealing with something else comes along. I hope that good luck is around the corner for you and you get a long string of it   x

Zeka – I am so so sorry to read your news . Amazing that you are being so positive and congrats on the work front     x

Peanuts – Getting test results back can be so draining. I’m so glad that you got your PMA back….xx 

Sobroody – great news that your hair is growing back. So annoying that we aren’t all told the basics when we start on all these drugs isn’t it. I wonder if I could take a supplement to stop all my grey hair!!! Seems to be sprouting like crazy! 

Hi to cozy, lalaby, pinpin, choice and everyone else…….. x


----------



## Louiseb26

Hi Ladies

Niccad - Thanks for asking   I'm feeling OK now...just felt really sick and wanted to sleep.So I'm not looking forward to the next one   I have blown you loads of lucky bubbles...only 888 to go   Hope your not going to crazy...not long now lovely  

Ells - Glad to see AF has come and your all ready to start...hope your feeling OK  

Agate - Hope your resting up on the sofa...I'm sure DH will tell you off if your not  

Good luck in Athens tomorrow girls...bed early tonight as its so draining all in one day  

Shellie - Where have you been lovely...hope your doing OK  

Mag108 - How are you? Did you managed to get booked  

Lalaby,Cozy - Hope your both doing well,and taking it easy  

Hi to everyone else.Loads of   all round as its give a   day today.

Lou xx


----------



## ratsy

Hi girls 

can anyone tell me how you get tested for antibodies to  HCG 

Thanks 

R xx


----------



## Peanuts

Good luck for all the ladies going to Athens tomorrow, hope it all goes well  

Seeing DrG tomorrow, so hopefully will come back with a plan and some prescriptions!

Take care  
Dxx


----------



## mag108

hi everyone
Good luck for all the athens goers.

Nicaad: xxxx  

Lou: yes, all booked, £32!
Be seeing you guys at 6.15 am in reception. Coming down from Manchester on train then tub to Heathrow Mon night so wont get there til 11ish,x

Am just totally full up. Work shockingly busy and will be til at least mid march. Had BIL here doing our floors for 8 days and staying with us (he's a lovely guy, live in Ireland) but desparately needing space. Too much stress this last few weeks... The crux of it all is all the planning and doing for next tx. I am struggling to find the time and space to get my head around it all. I am seriously worried that I will be too stressed at work and trying to manage tx and immunes and that I am wondering about going off sick. I feel bloody sick at the thought of it.


----------



## ells

Good luck to everyone going to Athens, I hope you all get there and back safely and are able to enjoy some of the trip    .

Ells


----------



## Desi

Dear All,

Sorry to gate crash, but am desperately looking for some of your advice. Excuse my language if it is not perfect English, I am Dutch.
Living in The Netherlands I feel I am living in the wrong country and in the wrong period of time with regards to reproductive immunology, this highly frustrates me. It feels as if I am living in a 3rd World Country. After 10 years of struggle, operations, research and a lot of attempts without the so desperately wanted result (a baby sister of brother for my daughter, who is 3,5) it is now or never (42) and time for a change in my approach.
Having read Dr. Beer's book I feel I finally found what I have been looking for, it is about me.....
Having found this forum also feels like coming home after 10 very lonely years! I am not alone....! Unfortunately for all of us.
I truly hope some of you can help me find my way in this information overload (I have spend many nights and hours on the internet searching for info).

I have not found any Dr's in Holland or Belgium? If some of you know otherwise, please let me know.
Please correct me if I am wrong, but I read of 4 Dr's in the UK who are specialised, Dr G in London, Dr. A. in London, Dr. T of ARGC and Dr. N in Nottingham? I have no more time to lose, so am not sure which one is best to approach and approachable?
I guess the London area is what I must focus on with regards to easy accessibility from Holland.
Then cost wise Dr G seems cheaper than ARGC? How about results? Anything known about this? Waiting lists? Thanks for your help!


----------



## Cozy

Hi Desi,

Dr Gorgy has almost no waiting list and he can do all the required tests and you can do IVF with him or elsewhere. Dr Ndukwe at Care does the majority of the tests but you have to cycle with that clinic. ARGC do testing, but again you need to cycle with that clinic. If you are referring to Dr Armstrong as Dr A then he does not do testing, he just does LIT if that is required.

So really it depends on whether you want to TTC naturally after having testing/treatment or you are planning on doing IVF as to which clinics would be suitable.

I would however recommend a consultation with Dr Gorgy and he will advise you what tests you need and when the test results are back he will sort out a treatment plan for you. He has been very succesful with his treatment with many people, including myself.

Good luck

Cozy


----------



## -Starflower-

I have two questions:

- Mr Gorgy said I haven't had a particular scan I need as a precaution and should get it done locally.  I recently moved and am seeing the new local NHS Gyne today but I've forgotten what the scan is I need to ask for.  It's the one where they inject liquid - can anyone help?

- Secondly, I think I might be off to Athens too!  I'm on the waiting list for LIT with Dr Armstrong but I'm 42 and want to proceed asap.  Does anyone have an idea how long the wait is?

Many thanks and good luck to all of you.


----------



## Louiseb26

Hi Sflower

The scan is called Hysterosalpingography (HSG) I'm sure thats what you want.

I have heard the other ladies saying that Dr Armstrong is booked up till March-April.It might be quicker for you to go over to Athens for LIT if you need it asap.

Good luck at your appointment.

Lou x


----------



## berry55

hi girls,

sorry i have not been on that much, been so so busy. I was reading that if having immune problems it can lead to serious health risks in the future. Is this true? if yes what would it be? I had an auntie who died of immune problems she caught a disease called besits (not sure of the spelling) it made her immune system stop working and nothing would heal in her body and also cause a lot of aneurysms (spelling again)  

berry xxx


----------



## FJ

Hi 
I wonder if you could help.  We are starting a medicated frozen cycle on the 10th of Feb under NHS Hospital.
I have posted on this thread before. Me and DH saw Dr Gorgy after two failed ICSI and he has said we needed LIT, IVIG, Intralipid, Celexane, Gestone, prednisolone.
We had LIT last week at the Portland with Dr Armstrong. I was originally told we would need to wait until March but I think there was a cancellation we were planning to go to Greece but luckily didnt need to.
I am going to contact healthcare at home re: IVIG and Intralipid. Just a bit nervious about IVIG being a blood product do you think I need it as wel as Intralipid? test results show I respond to Intralipid but Dr G has also prescribed IVIG.
I am going to ring around a few chemists later in the week about the other drugs to see what price it wil be. Dr Gorgy has not stated how many days supply of the prednisolone, gestone and celexane I need on prescriptions does anyone have any idea to save me £90 consultation fee for a quick question?
Sending lots of     to you all


----------



## niccad

Morning FJ.... clexane & prednisolone usually start at around day 7 of stims on a fresh cycle. I did natural FET so it was day 7 of my cycle. You'll need enough to get you through to the end of the 2ww (and you'll carry on when you get your BFP). Although my blood responds better to intralipids than IVIG I also had both on my FET cycle (although had 2 intralipids this go). Dr G likes to do these around day 7 and 10 of your cycle. 
Gestone starts the day after ovulation (or evening of EC)... Again you'll need enough to get you to the end of the 2ww.

re IVIG v intralipids... DrG does like to do both as he thinks the combination will work best if you respond to both. I didn't have such a great reaction to the IVIG - not serious but I did go all hot and itchy and my face got a bit swollen. The drip ended up taking 5 hours! That said I've had 2 intralipids this time (mostly as I thought my cycle would be cancelled so didn't want the expense of IVIG), but if I get a positive I'm going to have another go at IVIG straight away as I do believe the combination is best... 

Good luck 
Nic x


----------



## ells

Morning ladies,

Hope you are well and that those of you that went to Athens had a good trip.

Niccard, everything crossed for you tomorrow hunni!    

Berry you dont need to panic about it, if you have a health condition then you will need monitoring by your GP etc but if you are normally fit and healthy you should be okay hun.  

Hope everyone else is okay   .

I have a quick question, which may sound stupid as we havent started tx yet but... my GP has asked me to come and have the swine flu jab (Pandemrrix), I had my last Humria on Monday just gone, my question is should I have the jab and should I wait until next week to have it?

Thanks as always ladies   .

Ells


----------



## MissyMinx

Morning ladies,

Ells, with regards to the swine flu jab, I'm not sure why, but I personally would wait,  maybe you could post on the Ask a Pharmacist board as I'm sure that you'll be able to get good advice on there as to whether you're ok just to go ahead.  How're you feeling after the Humira?  Did you have any side effects?  Sending you  

Niccad     and     to you.

I hope Athens went well and that the ladies had a stress free journey.

Hello and   to all.

I had a telephone cons with Dr Gorgy yesterday as I had just a few questions, he was great.  He clarified for me the dates I need to take my Humira around the LIT tx, and reassured me that he wouldn't recommend DHEA.  He noted that some of the Level One tests my GP had done had not included Gene Mutation, Factor V Leiden and a couple of others, even though they were on the list of bloods that were ordered, so I'll be having those done when I have my follow up tests after the LIT etc.  He also recommended that I start on low dose Thyroxin as my levels were just a tiny bit off.  I felt really reassured after speaking to him, so it was a good thing to book the consultation, even if it was only for 10 minutes  

I did have a question that I wondered if any of you ladies may be able to answer.  Basically I don't tend to have my LH surge/ovulate until around day 22 of my 28/29 day cycle.  I understand this is called a short luteal phase, as I should have this surge around about day 14.  The week before AF arrives, so usually when I get my LH surge, I tend to have a massive flare up of my eczema.  It lasts until my period starts and then calms down for the next three weeks.  Since I've been trying to learn about the immune issues I've started to note more about various flare ups etc, and I definitely don't eat or drink anything different - it just happens on its own.  Could it be that I'm allergic to my own hormones?    Is there anything I can do to stop this?

Thanks ladies.  Sending you all  

Em.x


----------



## ells

Thanks Em   , I will post on the pharmacist board.  I have also left a message with my clinic to get their view.  I know why they have asked me to have it and its because of my immuno supps so they are worried that I would be at risk.

I get a similar prob with my crohns that it always gets worse just before AF and once it starts it settles down again.  I always wonder whether its the extra hormones going round. I am sure someone will be along soon and will be able to answer your question though hun.

Ells


----------



## MissyMinx

That's interesting about your Crohns getting worse too before your AF starts Ells, you're right, it must surely be something hormonal .  I did have a brief look around for swine flu jab info, and there was a question posted on the Ask a Nurse board about having the jab during tx, and the Nurse recommended waiting.  However, as you suffer from Crohns, it may well be different for you - I hope your clinic can give you the best advice though.  I hope you get it sorted and they get back to you soon.  Sending you     I'll be keeping everything crossed for you that this tx brings your BFP.    

Love,

Em.x


----------



## ells

Ahh thanks Em   .  

Ells


----------



## agate

MissyMinx said:


> I did have a question that I wondered if any of you ladies may be able to answer. Basically I don't tend to have my LH surge/ovulate until around day 22 of my 28/29 day cycle. I understand this is called a short luteal phase, as I should have this surge around about day 14. The week before AF arrives, so usually when I get my LH surge, I tend to have a massive flare up of my eczema. It lasts until my period starts and then calms down for the next three weeks. Since I've been trying to learn about the immune issues I've started to note more about various flare ups etc, and I definitely don't eat or drink anything different - it just happens on its own. Could it be that I'm allergic to my own hormones?   Is there anything I can do to stop this?


What is your CD19+5+ like? If you had antiprogesterone antibodies - this could cause a luteal phase deficit - but your CD19+5+ would probably be raised - and Dr G would be suggesting high dose gestone for you? Have you had your luteal phase progesterone measured and is it ok?

I can't instantly think why progesterone would cause an eczema flare up - because progesterone is supposed to be antiinflammatory rather than proinflammatory but if anything occurs to me I'll let you know.

My basic understanding is that flare ups of existing autoimmune diseases e.g., of crohn's, eczema etc sometimes occur at around implantation time and are a result of a flare up of TNFa due to uterine NK activity in attacking an embryo which is trying to implant - but I can't see how this would fit with the timing in your cycle - so maybe there is something in your hormone theory.



FJ said:


> I am going to ring around a few chemists later in the week about the other drugs to see what price it wil be.


I found Ali's of Shadwell (Rigcharm) were good for pred, gestone and clexane - if you do get your BFP try to get a prescription from Dr G that gets you only to your 7 week scan - cos then you can see your GP, get your maternity exemption cert and get it free from then on.



berry55 said:


> I was reading that if having immune problems it can lead to serious health risks in the future. Is this true? if yes what would it be? I had an auntie who died of immune problems she caught a disease called besits (not sure of the spelling) it made her immune system stop working and nothing would heal in her body and also cause a lot of aneurysms (spelling again)


Thats a really complicated question (and I haven't heard of the immune disease you mentioned), but you have to remember that the immune system is a very big topic. MOST of the issues we are concerned about for fertility do not carry major health risks... but....

1) some of the ladies who need immune tx for fertility need it because they have autoimmune diseases which have an impact on fertility/association with fertility issues eg coeliac disease, some thyroid diseases and crohns disease - just because someone has immune issues which are unhelpful to fertility, it does not mean they are likely to suffer from autoimmune diseases in the future - its just a small group of ladies who are in the category of having autoimmune disease and fertility issues - not all of us.

2) some of the clotting mutations that are fertility related eg MTHFR **** and factor V leiden might have health implications for the future because these carry some increased risk of diseases that relate to blood clots e.g., stroke so these health risks need to be managed as you get older - so ladies with these might need to manage their diet, might need anticlotting medication and might need to manage their folate intake.

3) some of the immune issues that we have that are unhelpful for fertility may actually be helpful for our long term health e.g., raised TNFa might actually give you some extra protection against some cancers

4) there is a genetic link between some autoimmune diseases so if you (or a close family member - e.g., a sister) has one of them, you may be more likely to have another of them e.g., if your sister has coeliac disease, its more likely that you might have POF etc

5) most of the immune issues that we are concerned about (e.g., NK cells, TNF alpha, high CD19+5+) are concerned with an immune system that is overactive rather than underactive. I don't know what disease your aunt had but it sounds as though you are saying that she was immunosuppressed rather than having an immune system which is overactive.

I don't know whether this helps at all? But basically, I'm trying to say that I don't think you have anything to worry about from the bits you've mentioned.

Niccad: good luck. hope this is the one (or two)!

Am so knackered after LIT trip (thanks to Donkey, Diane, Sobroody and 4angels for being so nice to me!) - even though all I did was nap in the hotel for 2 days - and I even got to stretch out across 3 seats on both flights so I slept then as well. So far so good - its nearly wed lunchtime and there has been no bad news about the 12 week scan and bloods - if it gets to 5pm with no call I was told I am officially in the 'low risk' group for downs and will just get my report in the post. Thought the doppler was broken yesterday, but it was just out of batteries.


----------



## ells

Agate,

All sounds very good hunni.  No phone calls!!!!!

You really do know your stuff hun, do you work in the medical prof?

Ells


----------



## agate

ells said:


> Agate,
> 
> All sounds very good hunni. No phone calls!!!!!
> 
> You really do know your stuff hun, do you work in the medical prof?


Thanks!

No, sorry, I have bits of a medical background and a few paper qualifications in other things but I don't work in anything medical and have no medical qualifications. Am here strictly in an amateur capacity!


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## ells

Well I thinnk you should have an honounry medical certificate for repro immune stuff from FF!!  

Ells


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## berry55

agate- thank you for all the reassurance. You have made me feel a bit better about everything. xxxx

Today i'm feeling a bit fluish again. My nxt humira injection is on monday, am i aloud to take it if i dont feel well? or if i have a cold? I'm feeling so so tired. I can cope with these side effects, i just hope its not gonna get any worse. Do u think the fact i'm feeling a bit fluish is a gd sign that maybe the humira is working? or am i just   again? lol xxxx

Hi to everybody!!! I hope your all doing well xxxx


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## agate

from what I've read, it sounds like normal side effects.  its always reassuring to feel something when you are spending all this money on stuff!

if you start to feel really awful or think you might have actual flu (maybe you should check your temperature?), I think I'd phone Dr G on monday and check with him before you take your next dose to be on the safe side, although I guess you are going to have to be the judge of whether you just feel a bit off or are coming down with proper flu.


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## ells

Berry, I have had coldy like symptoms since my last 2 jabs on Monday and I feel tired.  As I understand its good to get a bit of a reaction.  I'm not sure that the change in temp from hot to cold with the weather necessarily helps but I had the same after the other two injections last time and the symptoms wore off after a bit.

Cozy hun how are you feeling?

Lalaby, how are you doing?

Pinpin, hope everything is going well with you?

How is everyone else?

Ells


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## Louiseb26

Hiya Ladies

Glad to see all the ladies that went to Athens are home safe.

Agate - You must be knacked lovely.Glad to see everything is looking good...take it easy.

Ells - I'm with you on the medical certificate for Agate...maybe we could draw one up   Hope you feeling OK?

Niccad - Not long now Hun...hope your not going to crazy.See you got all your lucky bubbles.

Em - Glad to see the call with Dr G went well.I have to really listen to him when he talks...I'm always asking him to repeat himself   But on the other hand,hes always asking me to repeat myself...must be the cockney actcent   

I'm going to have my last lot of LIT on the 9th Feb,and my last Humira injection next Tuesday.Is it 2 or 3 weeks after that you retest your bloods...got to book an appointment with Dr G.

 all round girls.

Lou xx


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## MissyMinx

Hi Ladies, 

Agate - I agree that you're a star, you really do know your stuff where immune issues are concerned, it's amazing!  I thought you must work in a medicinal field too, but to have gained all that knowledge and understanding through your own research is fantastic.  I usually consider myself fairly competent and 'on the case,' but where immunes are concerned I always feel as though I'm way out of my depth. It's so good to have people like yourself to help answer questions, I'm really grateful.  My CD19:5 is 32.2, so well outside the range.  Dr G said it was my one result that 'really concerned' him, and that I would need Gestone for sure.  He's also going to give me some strong antibiotics to take after ET for some reason,  again I'm not sure why, but he said they might help.

Lou, how're you feeling after your Humira?  That's great that you're going for your last LIT - are you doing it in one day there and back?  I'm sure Dr G told me it was a fortnight after that you retest.  Thinking of you and sending you 

Berry, hope the flu symptoms ease soon, but fingers crossed they're just a sign that the Humira is doing it's thing.

Hoping all you ladies are doing well, sending   to all.

Em.x


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## Louiseb26

Thanks Em   I'm doing it all in a day...it does take it out of you.I felt very sick after taking the Humira,which lasted  a couple of days.I also felt knacked and wanted to sleep alot.So I'm not looking forward to the next one.
When your retesting bloods,is it right the bloods need to be taken on Monday or Tuesday to be sent away?

Lou xx


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## berry55

Thank you agate & ells for the info. If i feel more ill i will phone Dr G on monday! Ells i hope it is gd 2  have a bit of a reaction! xxx


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## Zeka

Niccad - praying for good news for you 

Here, here for Agate's honorary medical certificate! And pray test results are all good for you. 

...Is it wrong to go out and spend shed loads of money before you've started working!? After a year of window shopping I think I made up for it today, ooops!!

Love to all
Xxx


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## agate

Thanks ladies.

NO phone call!!!! yippee! It must mean that we got through the combined test/nuchals without a problem. wow. I guess I really am pregnant then.


Louiseb26 said:


> When your retesting bloods,is it right the bloods need to be taken on Monday or Tuesday to be sent away?


If you have them done at TDL you can just about get by with a wednesday morning as well - but generally if you are posting them up to TDL then a monday works best (so that they get to TDL first thing on tues and then get fedexed tuesday afternoon and are at RFU on wed morning - that way you'd definitely get your TNFa back by monday (and maybe even by Friday) - which is the same as if you'd had them done on a tuesday morning at TDL (only the bloods aren't quite as fresh - and fresher is better - but we can't all drag ourselves to london every 5 mins)



MissyMinx said:


> My CD19:5 is 32.2, so well outside the range. Dr G said it was my one result that 'really concerned' him, and that I would need Gestone for sure. He's also going to give me some strong antibiotics to take after ET for some reason, again I'm not sure why, but he said they might help.


Well, that does make some sense of your luteal phase deficit - you ovulate at day 20something but then there isn't enough progesterone around in your system (because you've probably got anti-progesterone antibodies) to hold back your AF for 14 days ish - it would reduce your chances of getting pg naturally and mean that you'd definitely benefit from more progesterone than average.

A lot of clinics do give antibiotics as standard, and Dr G definitely gives them wherever he has any suspicion that you might have a latent tubal/uterine bug like chlamydia (even if its not been detected or has been treated, because sometimes they are hard to kill if they get high up in your tubes) and EC/ET can give it an opportunity to get going again if its there. If you did get a bit of a bug at that time, it would raise your NK activity and you'd pump out TNFa which would be pretty unhelpful - so I think its basically just a precaution.


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## ells

Hi ladies,

Lou, it is 2 weeks after the last jab you have to have the retest.  I dont know about having to have them done on Monday or Tuesday hun.  I dont feel too bad, just achey, fluey and tired but all in all not too bad considering it was a double dose.  You are good going to Athens and back in one day, you really will be shattered after that.

Zeka    good for you having a spending spree!   You desrve it hun.   

Em, where are you in your tx?  (sorry if you have said already but I cant remember   )

Fab news Agate, congrats hun.  At least you can relax alittle now   .

Hope everyone else is okay,

Ells


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## Chicky Licky

Agate - What are these 'combined test/nuchals' that you've had done then? Glad it's good news for you...even if I don't know what it is!!! lol!  

Lou - I'm still here, just haven't been online so much recently. Not looking forward to our next Athens trip but looking forward to seeing you and Mag again.

xx


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## Cozy

Agate, great news about your nuchal, another hurdle over. I hope you havent had anymore bleeds.

MissyMinx, I also have high CD19+, CD5 -47.8 and I have had IVIG, Intralipids and Gestone for that. Were they mentioned? Re the antibiotics, it is something he does pretty much as standard now as a precautionary measure.

Hope everyone else is doing ok  

Cozy


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## agate

ShellieG said:


> Agate - What are these 'combined test/nuchals' that you've had done then? Glad it's good news for you...even if I don't know what it is!!! lol!


Depending what the NHS offers in your area, at about 12 weeks you might get offered scans, bloods or a combination of bloods and scans which are all designed to identify pregnancies with a higher risk than average of downs syndrome (and a couple of other serious genetic conditions). None of these tests tells you anything definite - they just put you into the categories of 'higher risk' or 'low risk', and even a low risk does not mean that your baby definitely doesn't have down syndrome - just that its unlikely.

The combined test they offer here is where they take measurements of the nuchal tissue (at the back of the baby's neck) on the ultrasound (thicker nuchal measurements are sometimes associated with down syndrome) and then they feed that result together with some blood test results (and your age and bmi) into a computer program which spits out a result that gives you an odds ratio of your baby having down syndrome e.g., it might come back as a risk of 1 in 900 or 1 in 150.

Its a bit scary because if you get a 'bad' result it may mean absolutely nothing at all e.g., if your result is 1 in 50 then there is still only a small chance that your baby would have downs, but then you would be offered other tests (like amniocentesis) which are much more conclusive but carry a small risk of miscarriage... and then you'd have to decide whether to have those tests or not, and you'd have a bit of worry hanging over your head as to whether your baby has downs and whether you might miscarry (down's syndrome babies are more likely to be miscarried than other babies).

Anyway, it looks like we've cleared that test, phew (was worrying myself sick before it)! So the next thing is just my NK retest, then I need to get a growth scan somewhere so I can report back to Dr G (so he can factor it in for the drips)- other than that I just wait now for the 20 week anomaly scan. None of these seem quite as scary as the 12 week one (at least not at the moment!)


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## Chicky Licky

Thanks for explaining that for me Agate. It all sounds very worrying even when you do get a BFP!
Hopefully one day I'll know all about it.    I'll look forward to hearing all about your wk 20 scan.

As for me, big day tomorrow at Dr G's as I find out if I've got to have an op or not to remove a polyp, before my next cycle. I had the op over a year ago and the surgeon said it had reduced in size and wasn't in a place to affect things - he  couldn't even remove it as it was round a bend or something!! lol!    I think Dr G just wants to double check though.
Fingers crossed it's reduced even more or has vanished completely. No-one mentioned it when I was scanned on my last cycle, so I live in hope!

xx


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## ells

Good luck for tomorrow Shellie.

Ells


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