* Author Topic: Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)  (Read 192761 times)

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Offline agate

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Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
« Reply #190 on: 6/04/11, 20:27 »
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    Offline angela123

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #191 on: 8/04/11, 18:39 »
    Hi Everyone, and Agate
    Just came back from DR Gs and I am completely confused...dr g was saying that i should leave 2-3 months before cycle IVF cycle after humira  ...I explaned to dr g that I have to cycle next month( at the latest, i want to cycle this month!!) as
    !!) as i am due for DE on 25th july......so he relented a bit.........
    .........as I have informed before TNFa has gone down from 43 to 33 but Dr G SAYS i need 2 more shots....
    .......and interiplis on 2nd shot he has also said I need LIT......I asked why as my level was at 55 but he said because of my MC it should be at 80-90?????? then when i booked for lit with secretery i was told there was no apointments till
    may!!!!!!! i am totally confused.... my questions are....
    Does LIT stop MC??? is it normal to have level 80-90????
    Why do i have to wait 2-3 cycles before ivf???? i though it only stays in your system for 5 months anyway????

    MY DE clinic have told me if i cycle early may i will not have time to prepare for DE in july and i should postpone...but that means I have to wait till December for next slot....and face going through immmunes again...plus my heart is not up for another 8 month wait....... shall i igore DR g and cycle this month? any advice would great.......

    Offline agate

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #192 on: 9/04/11, 08:33 »
    angela: having a low LAD in a lady who has recently been pg and m/c is associated with a higher chance of another m/c - but 55 is not all that low, especially if it was only 1 m/c at less than 6 weeks - there aren't any right answers, but obviously Dr G would prefer your LAD numbers are as close to 100% as possible so there is no room for doubt - but it is your decision. 
    if you are going to be cycling OE then waiting 3 months after humira before you cycle MAY help to optimise your egg quality, because eggs take something like 3 months to go through maturation, and ideally, you want them to mature in a low TNFa environment,  but it all depends what your priorities are - the wait probably won't help much if its a DE cycle because then you won't be concerned with your own egg quality, and if you are rushing to squeeze in an OE cycle on a tight timetable and can't wait 3 months and that's what you've already decided, then I guess you aren't going to change that either?

    its good that you did respond to humira - so you could either take that as a positive sign that if you took some more it would help even more, or you could maybe go with an intralipid 'top up' and go without humira.   There are no right answers, but obviously Dr G wants to offer you everything that he feels might help, so if he thinks that LIT may help your chances he will want you to have that, and if he thinks another couple of shots of humira will help, he'll suggest that... but you are never going to know for sure whether these tweaks will make an all important difference or not.  At least you will have got the basics right - i.e., getting your TNFa down to something more normal (and your NKa if that's an issue too - with steroids/intralipids etc) - but in the end, you have to decide how important it is to you to meet this timetable vs how important it is to make your LAD and TNFa absolutely perfect.
     
    best of luck whatever you decide to do

    A x

    Offline angela123

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #193 on: 9/04/11, 09:25 »
    Thanks Agate,
     Your advice is always good....I have been in touch with DE clinic and begged for an earlier cycle.......august or september.....so
    I can folow Dr G advice to the letter....with such dodgey FSH/ amh I think I need all the help I can get.......after a nights sleep..... I am more relaxed...thanks again agate...x

    Offline Hope ^J^

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #194 on: 9/04/11, 10:11 »
    Hi Girls!

    Any positive experience from you have had Humira without any side effects and ends with good results?? It's soo difficult to keep positive that it is working if no hints of my immune system been suppressed i.e. colds, sore throat or cold sores  ^idiot^
    To you who are like me being patient all of these   ^reiki^ ^reiki^ ^reiki^

    x x

    Offline Amily

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #195 on: 9/04/11, 11:34 »
    Agate
    Could I ask for your help please?
    Re your response to Angela on this thread: Which of the LAD scores is it that you are both referring to. I have checked my results and I have  T cells IgM=, T cells IgG+, B cells IgM+ and B cells IgG+. I have had 2 lots of LIT and would like to know what to look for when I re-test. Thank you!
    Re intralipids...
    My NK Assay % killed panel results are
    50:1 11.8
    25:1 8.5
    and with intralipids
    50: 1 w/Intralipid 1.5 mg/ml 7.8
    25:1 w/Intralipid 1.5 mg/ml 1.4
    What do these results mean? Do they mean intralipids help?
    Thanks very much again.

    Offline agate

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #196 on: 9/04/11, 12:45 »
    Agate
    Could I ask for your help please?
    Re your response to Angela on this thread: Which of the LAD scores is it that you are both referring to. I have checked my results and I have  T cells IgM=, T cells IgG+, B cells IgM+ and B cells IgG+. I have had 2 lots of LIT and would like to know what to look for when I re-test. Thank you!
    Re intralipids...
    My NK Assay % killed panel results are
    50:1 11.8
    25:1 8.5
    and with intralipids
    50: 1 w/Intralipid 1.5 mg/ml 7.8
    25:1 w/Intralipid 1.5 mg/ml 1.4
    What do these results mean? Do they mean intralipids help?
    Thanks very much again.

    those results show that intralipids do reduce your NK killing power after 2 hours in a test tube - but they are probably not relevant to you because your NKa was normal to begin with (below 15% before adding any intralipid) - I guess its still a good sign that your NKa do respond to intralipids but it would probably be stretching the truth to start using that test to guess whether other parameters like TNFa would definitely respond to intralipids.

    For the LAD test, most ladies look at the average of the 4 results and hope for an overall greater than 30% or preferably greater than 50% - but the last number, the B cells IgG is supposed to be more important than the other categories - so often we look at the last number and hope that its over 30% (or better, over 50%).  IgG represents the more mature response where IgM is more the earlier response - and most ladies have better antibody recognition of B cells than T cells.     If you have never been pregnant before then the LAD test is not necessarily meaningful because you don't know for sure whether your LAD would rise normally when you finally get pg.   For ladies who have recently been pregnant or know they have had repeat miscarriages, then a low LAD is generally something that you would want to try and fix - as low LAD numbers are associated with repeat miscarriage - whereas high LAD numbers tend to be more associated with live birth.   If you have never been pregnant, then a low LAD may be normal - but because you won't know for sure until pregnancy happens, docs like Dr G prefer that you try and raise it with LIT just to be sure that you aren't someone who struggles to get a raised LAD in pregnancy.   From reading posts on here, I get the impression that most of Dr G's ladies who have LIT do manage to raise their LAD - so either it was going to raise anyway when they got pg, or LIT helped it along.  A tiny minority of ladies, struggle to get their LAD up whether with LIT or with pg or both, and for those ladies, repeat LITs in pg are recommended by those clinics who support LIT.  But if you haven't been pregnant and your LAD is low, its really up to you whether you want to have LIT and get another possible issue ticked off, or whether you want to assume your LAD will respond normally when you do get pregnant.   Whereas, ladies who have had repeat miscarriages and still have a low LAD probably want to have LIT before trying again.  hope this helps

    Offline Amily

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #197 on: 9/04/11, 14:11 »
    Thank you Agate.
    I have never been pregnant and have had LIT on Dr G's advice. Not that much fun but definitely worth doing, I reckon. My B cells IgG+ is 30.8%. I just assumed repeat LIT would be necessary if I got as far as a BFP so that's interesting to know.
     
    Thanks very much.

    Offline Tina K

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #198 on: 9/04/11, 15:03 »
    Hello girls
    I need some advice - feeling pretty desperate
    My TNFa was tested at 38.2 and I had one round of humira (2shots) and one IL drip at the same time as the second injection and retested 7 days that. Results have come back at 48.
    The problem is I am over seas waiting for embryo transfer on Monday so there is nothing I can do about it and I can't get in touch with dr g either.
    My clinic abroad don't do ILs but do iVIG.
    What should I do - I can't speak to dr g until Tuesday but I could get an iVIG on Monday at my abroad clinic but don't know if this would be the right thing or what the right dose would be.
    Feeling utterly devastated. I have never had high TNFas before and I can't believe I now have had a flare.  I feel like this cycle is a waste of time (and it's out last go so feeling totally desperate).
    Any advice or thoughts gratefully reeived
    Tina

    Offline agate

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #199 on: 9/04/11, 16:20 »
    Tina: I can't say whether its better to abandon the cycle and try again later or not, but before intralipids and humira, ivig (with steroids) was used by clinics like AEB as the only treatment for high TNFa, and then after the introduction of humira, its still recommended for ladies who don't respond to multiple shots of humira (or intralipids).    At least because its DE you just need to try and get the environment right for implantation rather than trying to get it right to mature eggs as well.   

    There are a few ladies who've mentioned on FF that they got pg despite their TNFa going up on humira rather than down - so its just possible that may happen to you - but there probably isn't going to be any way to know whether

    going ahead without any more drips, or
    going ahead with some ivig on board, or
    postponing until you can get some more ivig/humira on board

    is going to be the better option for you

    So, particularly if you are already there and its going to be costly and difficult to postpone, going ahead now seems worth a try and if its really going to be your last go, it might be worth trying ivig?

    IVIG is often given at its about 400mg per kg of your body weight but is rounded (usually downwards because of the cost) to the nearest 5g and its usually given about 7 days before ET, although some clinics give it on ET day.  Maybe your overseas clinic can discuss giving IVIG asap with you?

    best of luck whatever you decide

    A x