* Author Topic: Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)  (Read 194296 times)

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Offline Tina K

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Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
« Reply #250 on: 4/05/11, 12:21 »
HI Girls
Just wanted to update you. I had a scan today at exactly 6 weeks and there is a baby, in the right place, with a heartbeat.
I am delighted, still in a state of shock, but also realistic as we have been here 4 times before with only one positive outcome – but very pleased to be in this position again and am very hopeful it will mean a brother or sister  for my DD.
Agate – can you help me please? I cant speak to Dr Gorgy until Friday but I have booked an IL drip tomorrow. I haven’t had my NK cells retested since I got my BFP but in previous pregnancies, my NK cells have not been a problem other than high CD3 which I think is controlled via prednisolone? But my TNFa were 48 at transfer (I had 10g iVIG at transfer and 25g at 8dp5dt). I thought it would be worth a ‘belt and braces’ approach and do an IL drip tomorrow and then discuss with Dr Gorgy what next (I can only get a telephone consult on Friday) – do you think this is the right thing to do? I assume it wont cause any harm (its just a dent in the wallet!). Otherwise I am not in London until next Wednesday and I didn’t want to wait that long to do a drip…….
I really appreciate all your support over the last couple of weeks
Good luck to everyone – the positive side of this is that even with a poor response to Humira and high TNFas you can get a pregnancy!
Take care
Tinaxx

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    Offline agate

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #251 on: 4/05/11, 14:51 »
    tina: to me, that sounds like a good approach.  dr g doesn't normally have you retest your immunes until after your heartbeat scan - when you have your drip after that, he has you wait for 7-10 days then do your retests.   congratulations!

    Offline Tina K

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #252 on: 4/05/11, 20:14 »
    Agate - thanks so much for your help...
    Tinaxx

    Offline JudeManchester

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #253 on: 5/05/11, 21:40 »
    Hello all,
    Excuse me butting in but Agate recommended this thread to me on another thread.
    I am currently TTC naturally and am having immune meds with Dr G. I took my 2 shots of Humira 2 weeks apart and then retested my cytokine ratio a week later and unfortunatley it's gone from a high 42 to a very high 53.  :( Was gutted as know Beer's book says TNFa needs to be below 30 for pregnancy so feeling very reassured reading about Tina still conceiving whilst hers was still high.

    Dr G is suggesting another 2 shots of Humira but that doesn't make sense to me and I'm very worried about spiralling costs - would it be better VFM to go for IVIg instead or do you think I should persevere with the Humira? Anyone out there had similar non-response to Humira? Anyone had success on shots 3 and 4? I've also had LIT and 2x intralipids.

    Me and DH have started a months worth of a-bios this week to try and clear Hidden C. Think I'll wait to make any decision about taking more humira until all that is done...

    Springflower - I rang around a lot of places (Asda, Tesco, Coop, Superdrug) and the cheapest place (by some margin) to get Humira was from Healthcare at home - the number's in Agate's FAQs. Think it was just under £750 on a debit card and just over on a credit card.

    Jude x

    Offline Lanta

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #254 on: 5/05/11, 22:27 »
    Jude - haven't posted on here for a while but couldn't read and run

    I had two courses (I.e 4 shots) of Humira and my levels went from 41 to 44 to 46... So guess you could say I didn't respond to it! I'm with the ARGC and they'll only ever give you two courses and then try other things like intralipds and ivig. I had Intralipids at the start of tx and they said they wouldn't have started tx if they didn't think there was a chance of pregnancy. Apparently Humira has a longer term effect so may continue to come down after you've re-tested, also it's quite common to get a flare before it reduces on the second course.  Not sure if that helps,  but I know what a stressful decision it is as you want to feel like you've tried everything without breaking the bank. good luck with whatever you decide  ^hugme^


    Offline Lilirose

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #255 on: 9/05/11, 10:55 »
    Hi all

    We're from Dublin, so flew over to ARGC to get what I thought would just be my Day 2 bloods done on Friday. I had rung and told them I hadn't heard about my chicagos yet and was told someone will talk to you about that when you come in for your bloods.  So I stupidly thought they would be ok. Not so.  Humira was practically stamped all over my file.  I had to take it last year after my cytokines came back at 42.  I got it retested and it had only come down to 39.  I never got it tested again till I was over for my mid-cycle scan during the monitored cycle.  It's come back at 64. I can't believe it's so high.  The girl said it was up to me but Mr T had recommended it.  I'm worried now that I'm on of the 10% it doesn't tend to work for.  Does anyone know if any supplements can help bring it down?  I was on a few supplements for hte last while which I've decided to stop as something must be pushing up my levels.  I was on MorEPA, eskimo oils, Vit D3 and wheatgrass tabs (to help bring down my FSH).  I'm thinking somehting there wouldn't have helped.  I've heard magnesium can help? Anyone know is that right?

    Am so disappointed and upset.  DH and I had psyched ourselves up to the thought of being apart for the 2 weeks, we had organised the house and our cat and I've taken 2-3 months off work.  And now I have to wait at least 7 weeks before even thinking about cycling again and even then that'll only be if the cytokines are alright and my CD2 levels are alright as well. It feels pretty hopeless right now...

    Lx

    Offline agate

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #256 on: 9/05/11, 14:12 »
    lilirose: some studies suggest that wheatgrass might raise TNFa.  you might want to look into resveratrol. 

    Offline Lilirose

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #257 on: 9/05/11, 14:21 »
    Hi Agate,

    thanks for that, will check into it.  I've heard turmeric helps as well, do you know is that right? Last thing i want to do is start taking stuff that makes it worse, any help would be appreciated.

    thanks

    Lx

    Offline agate

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #258 on: 9/05/11, 14:44 »
    yes - tumeric/curcumin is supposed to reduce TNFa - so long as it doesn't upset your stomach.   Also nettle and possibly green tea.   but resveratrol is 'popular' at the moment with some docs and is supposed to reduce tnfa - you might want to have a quick skim of the supplements section in the FAQ on this section of the board (link in my signature).

    Offline Lilirose

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    Re: Humira Ladies ~ Part 2 (formerly Humira Experiences)
    « Reply #259 on: 9/05/11, 14:48 »
    Brilliant thanks a million Agate, really appreciate that.

    Lx