* Author Topic: Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)  (Read 191380 times)

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Offline Lilirose

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Re: Humira Experiences ~ Part 2
« Reply #60 on: 6/02/11, 14:50 »
Hi Jo

thanks for your reply x

I'd had a look at the Lister website and thought Dr. Thum sounded right for me so good to have that reinforced by what you said - why don't they prescribe humira? That's mad, surely if it can help? My Chicago bloods showed I responded better to intralipids than IVIG - is IVIG the same as intralipids, i.e. you're hooked up and it goes into your veins? Sorry what's tx? Can't work out what that means but see it's mentioned a lot on here.   Our issues are mine really - blocked tubes, low AMH and now the cytokines - oh also I had a test done through an independent gynae (Teg Test) where I tested positive for 'sticky' blood and have been on double nuseal aspirin since October...Thank God DH is fine...

Just so hard to know what the next step is... are you currently cycling with Lister?

Lilirose

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    Offline jo_11

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    Re: Humira Experiences ~ Part 2
    « Reply #61 on: 6/02/11, 15:00 »
    Lilirose:  Tx = treatment.  The Lister won't prescribe humira as it's not approved for use in fertility tx through the BMC; it's just the clinic's stance.  Dr T made it v clear though that he would not be against me having immune tx with Dr Gorgy (who did my immune tests... I only found out after that Lister do the full immune tests too; I thought they only did the 'lite' tests).  Surprised you're not on clexane for stick blood; I've been recommended it for MTHFR heteroygous.  I'm not currently cycling at all (unfortunately); I'm doing my second round of humira, so no chance of cycling 'til I've done the second injection and had the re-test.  I wouldn't hold much stock re the AMH test tbh; mine was 3.44 when I got 13 eggs.  I know loads of ladies who've produced eggs which goes against what they 'should' have based on AMH.  All the best.  As for IL vs. IVIg; IL is a TPN (so food based IV drip, generally used for patients unable to eat), whereas IVIg is a blood-based product, again IV and costs about 4 x IL. 

    Offline Lilirose

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    Re: Humira Experiences ~ Part 2
    « Reply #62 on: 6/02/11, 15:06 »
    Jo, thanks again that's really interesting. I was on clexane when I was cycling, last time I was on .2 this time I was on .4.  And the double aspirin.   But am not on clexane between cycles. the gynae who did the test said he had a lot of success with women who had recurrent m/c by putting them on the double aspirin... Best of luck with your retest, hope it's come down (it's under 30 that it needs to be isn't it?)

    Might get onto ARGC and see if we can get a consult anyway, and take it from there.

    thanks again

    Lilirose

    Offline May-be

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    Re: Humira Experiences ~ Part 2
    « Reply #63 on: 6/02/11, 16:17 »
    Hi again!
    Thanks girls! Jo, yes, i've been waiting for so long to start tx that doing mini immunes couples of days early doesn't bother me  :)
    I'm also 41 so rather do it sooner than later.
    You are also on the 2nd round of Humira. Do you use anything else apart from Vit D and Omega?
    I know that some girls do some special diet to extremes of not eating anything with gluten. Not sure if i could do it.

    I probably will be on IL as well, but they will decide after next mini immunes test.

    Big hugs to everyone!  :)
    Gx

    Offline Mousky

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    Re: Humira Experiences ~ Part 2
    « Reply #64 on: 6/02/11, 19:05 »
    Hi ladies,


    Sorry to interrupt  :)


    I see that many of you had "flares" and still took more Humira?
    My TNF-a went from 36.8 to 45.8 after H.
    I've got joint pains (quiet uncomfortable, never had that before) since my 2nd shot and wasn't really planning to take another 2 shots.
    I know some ladies just got pg and had healthy babies with high levels of TNF-a, so I guess there's hope still.


    For the ones who haven't been able to bring your levels down, did you just carry on with IVIg and IL(+pred)?


    btw, Gosia, I seem to be one of these ladies  ::)  I have allergy to gluten, dairy, eggs, soy and I'm vegetarian  ::)  still plenty for me to eat  :)  I can honestly say my thyroid antibodies disappeared after the diet (and so many other things I've taken) BUT as you can see, it had no effect on my TNF-a cells  :-\


    Offline jo_11

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    Re: Humira Experiences ~ Part 2
    « Reply #65 on: 6/02/11, 19:32 »
    Mousky:  Yes, I had an initial flare on humira, but apparently that's quite common... just wish I'd been told that at the outset as I may have thought twice due to all the .  Ah well, we are where we are.  We're hoping the second lot of humira jabs will bring down the TNF-a and I'm having IL with my second shot next Fri to try and avoid a second flare.  If our second lot doesn't work, then it'll be IL/IVIg plus pred.  I guess you won't be able to have IL though, due to your soy allergy.
     
    Gosia:  I've cut out gluten and found it v easy tbh.  I found out at the beginning of the year, when I had some food allergy tests, that I have an intolerance.  I was surprised as I've never had any symptoms from gluten but, as the lady said, "it will be affecting your body in some way"... and the following week I had my follow-up with Dr Gorgy re my increased TNF-a levels after the first lot of humira, and he said that TNF-a levels would def be affected by a gluten intolerance.  Funny how things work out isn't it?  Try Googling 'gluten and fertility' and it's enough to put you off, even if you don't have an intolerance!  As for supplements, I use Vit D, EPA/DHA (rather than Omega 3), CoEQ10, royal jelly, double dose folic acid, Vit B complex, Selenium and Zinc.  Think that's it  ::)
     
    Lilirose:  Just to be warned, it's a long wait to get an appt at ARGC; it's like trying to track down the holy grail!

    Offline May-be

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    Re: Humira Experiences ~ Part 2
    « Reply #66 on: 7/02/11, 00:07 »
    Mousky, so the diet still worth it in your case. I've decided to do Level 1 diet:
    http://www.level1diet.com/index.html  ( I hope it will show the link)
    It is anti-inflammatory diet and pretty much the same as no gluten diet. I think i can do it for a month and see if there'll be results. Although not sure if DH will want to follow it :)  Well, it's just matters of dinners.

    Jo_11, i just bought pharmaceutical grade fish oil (will use 2,500mg of EPA/DHA) daily, Gamma Linolenic Acid from Borage Oil about 250mg of GLA, Green Tea extract, Vit D3 5000iu a day, Turmeric extract (curcumin).
    They are all supplements in that anti-inflammatory diet. Won't hurt, even if don't help.
    Oh, and started visualizing TNF& at 12% ;)
    I'm already taking Zita's Vitafem, and Q10 but i think i will also increase folic.
    Definitely feel more optimistic today! :)

    Girls. what do you eat for breakfast if you don't eat wheat or gluten?

    Big hugs for the coming week!
    xx

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    Offline Lanta

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    Re: Humira Experiences ~ Part 2
    « Reply #67 on: 7/02/11, 08:58 »
    Hi ladies - I thought I may as well add my two pennies worth on diets!  I was chatting to a friend other day who said she was following the Paleo diet, sounds very similar to gluten free/ low carb etc . Anyway what got my attention was when she said it was good for those with auto immune conditions (she doesn't know I've been doing immune tests so this was a coincidence).  I looked it up on Amazon and apparently it's good for those with Rheumatoid Arthritis, so seeing as that's what Humira treats I though I may as well read the book and maybe give the diet a go.  The link is below,  But if that doesn't work the book is called Paleo Solution by Robb Wolf.

    https://www.amazon.co.uk/Paleo-Solution-Robb-Wolf/dp/0982565844/ref=sr_1_5?ie=UTF8&qid=1297068300&sr=8-5

    I'm on my second course of Humira, so at the very least I'm going to cut out wheat and dairy until tx. and keep popping the Vit D and Omega 3! One day something will work :) Failing that I might resort to drinking like a fish and smoking like a chimney as that seems to do the trick for half the population out there  ;)

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    Offline Mousky

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    Re: Humira Experiences ~ Part 2
    « Reply #68 on: 7/02/11, 10:01 »
    Thanks for the thoughts  :)


    I think in my case, it's not even only that I flared but the joint pains I have since my 2nd shot! It feels a lot like RA but I could only get an appointment next month so still don't know.
    For RA (possibly other inflammatory diseases as well), I've been reading about excluding nightshades from your diet.
    Things like potatoes which I used to eat a lot, tomatoes, aubergine, peppers, some fruits...
    Some people swear by this diet and I must say I've noticed I felt worse after eating potatoes  ^idiot^
    I think it's worth to try a few things and see how you feel.


    Gosia - I guess I'm lucky my DH also follows the diet and he likes it  :)  Have you tried going to a bio store? I think whole foods and planet organic also have options for going gluten free. From bread to pancake mix, cakes if you can, cereal etc. I think cutting off dairy was way more difficult for me and I still have cheese here and there  ::)  But yes! It's so worth it for me. I feel so much better. It just doesn't seem to have an effect on my TNF-a AFTER 2 Humira shots. Before them it wasn't that bad. I hope dieting, time, ILs, IVIg and Pred will bring them down  ^reiki^


    Jo - good luck with your second shot. I hope it does the trick  ^reiki^  btw, I've already had IL. I had blood tests after that and it didn't seem to have an impact on my soy allergy  ???  Maybe it's a digestive issue  ^idiot^


    Lanta - good luck for you as well  ^reiki^

    Offline jo_11

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    Re: Humira Experiences ~ Part 2
    « Reply #69 on: 7/02/11, 11:35 »
    Lanta:  'Drinking like a fish and smoking like a chimney'  ;D ;D   Love it!
     
    Mousky:  Would the IL have an impact on your TNF-a if you're allergic to soy?  Just a stab in the dark (and based on zero medical knowledge!).
     
    Gosia:  I tend to have raw bars for breakfast; so the nak'd ones, or Gillian McKeith.  You can also get GF cereals, which I sometimes have with almond milk (yummy).  TNF-a at 12%; jeez, it's like the Holy Grail now isn't it?!   ;D
     
    And thanks for the diet links ladies; we'll be experts at all kinds of things that we never dreamt of before treading down this ttc path!
     
    Jo
    x