* Author Topic: Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)  (Read 192430 times)

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Offline Amily

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Re: Humira Experiences ~ Part 2
« Reply #160 on: 20/03/11, 20:23 »
Thanks Electra. I spoke to Dr Gorgy and he said it was fine to go ahead and didn't mention this at all. I agree - confusing.

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    Offline agate

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    Re: Humira Experiences ~ Part 2
    « Reply #161 on: 21/03/11, 14:54 »
    I have never heard any doc say or seen any study that suggests that humira 'puts your eggs to sleep' - the only related thing I have heard is that Dr Beer suggested that, for some patients, humira might have a beneficial effect on egg quality by reducing the TNFa level of the environment that the eggs are matured in, but it might take up to 6 months to reach its maximum effect because those eggs that are due to be ovulated in the next 2-3 months will have already been maturing in a pre-humira (and presumably high TNFa) environment and may already have been damaged by it.  I've always seen that as a sort of 'consolation prize' for ladies who have had an unsuccessful cycle despite humira treatment, in that they can hope that their egg quality is getting better.

    Offline Rome2304

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    Re: Humira Experiences ~ Part 2
    « Reply #162 on: 21/03/11, 15:49 »
    Hi,
     I am new here after having a phone consult with Dr G when my TNF came back at 194. He has adviced me to have humira with intralipid on the second shot and then retest. What is the max amount of humira injections one has ever had ,as I am thinking my levels are so high its going to take alot to bring it down? He has also adviced IVIG so can this be taken with humira before a cycle? Many thanks, Rome

    Offline agate

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    Re: Humira Experiences ~ Part 2
    « Reply #163 on: 21/03/11, 16:53 »
    i haven't heard of ladies having more than 3 x 2 humira shots per fertility cycle. 

    I said before that I thought that ratio was so high it had to be a typo - I just haven't seen anything that high.  have you tried the yahoo reproductive immunology group? with a ratio that high my first thought would be to try to work out why its so high in case its an infection or a vit d deficiency, coeliac disease or something else that can be addressed first and then to try and think in terms of trying to normalise your immunes overall if you can.   if your TNFa:IL10 is so high - it presumably means that not only is your TNFa high, your IL10 is low, so maybe there are things you can do to support your immune system to restore the balance.   IVIG (and hopefully intralipids) are supposed to be immunobalancing rather than purely immunosuppressive like humira - but so are lots of supplements like omega 3 fish oils.   maybe read the supplements and diet section of the FAQ?  have you tested all the level 1s with your GP.  Just thinking that maybe an FBC would show signs of an infection maybe, you could test your vit D levels and make sure things like thyroid are ok and you haven't got lupus or RA?   

    Offline urbangirl

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    Re: What is considered a good result with Humira?
    « Reply #164 on: 21/03/11, 22:37 »
    Sorry, I'm jumping in here with a different query.... two queries really which I'd really appreciate some help with.  I had just decided to bite the bullet and take Humira but now I've read on this thread that some people's symptoms get worse.  When that happens and your re-test level shows it's gone up does it always settle back down again?  It doesn't ever stay up, does it?  I don't want to be worse off than when I started.  >:(  >:(

    Also, I've seen some ladies here happy that their levels have gone down four points, which is my next question - How many points should our levels go down after Humira for it to be considered a 'good' result? when should we celebrate?  My level is 36 so if it went down to 32 would that be considered a great reduction, or just a middling/ little one and not worth repeating the Humira?  It would be lovely if my consultant had talked about this... but I dream on as the money flows out from my pocket into his.. >:(

    I did ask him if women with my levels ever got pregnant and he said  "Women get pregnant at all levels." So that didn't assist much in helping me decide whether is is worth the expense!!!  I have just stepped into the immunes world so the superior knowledge of you ladies would be greatly appreciated!
     Love and luck to all!  :-* :-* :-*

    Offline Springflower

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    Re: Humira Experiences ~ Part 2
    « Reply #165 on: 30/03/11, 13:33 »
    Hey Ladies

    I had my 1st Humira injection on Sunday.  I just wondered if you were going to suffer from sideffects if it would happen within a couple of days of does it take longer?  So far I feel the same as usual.  Also if I dont suffer any side effects from the 1st and I likely not to get any with the 2nd?

    Offline angela123

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    Re: Humira Experiences ~ Part 2
    « Reply #166 on: 31/03/11, 18:12 »
    hi springflower, sorry to be the bearer of bad news......I didnt have any side affects 1st injection but my god did i have on my 2nd........ sore joints, headaches, nausea.

    Offline Amily

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    Re: Humira Experiences ~ Part 2
    « Reply #167 on: 31/03/11, 21:38 »
    Hi Springflower
    I had no real side effects on either.
     
     
    Can anyone advise? I have got my re-test results back after Humira and it has gone up (by 1.1). Now 39.9.
    I am gutted that it hasn't worked after that huge expense (including the retest and the need to get up at 4.45am to get to London to have retest!)
    I have seen references to the flare that urbangirl mentions so I have the same question...
    Feeling really low that TNF-a has gone up when am due to start down regging soon.
    Any comments gratefully received.

    Offline urbangirl

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    Re: Humira Experiences ~ Part 2
    « Reply #168 on: 31/03/11, 21:55 »
    Oh no, poor you, I hope someone answers this, I decided not to take the Humira after all till I found out because I was so worried about that.  So I have to start my ivf next week without.

    Offline agate

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    Re: Humira Experiences ~ Part 2
    « Reply #169 on: 31/03/11, 22:04 »
    amily:  I'm sorry it isn't better news.  however, I would say that a shift in the ratio of about 1 is probably pretty meaningless - these cytokines are pretty difficult to measure and they do fluctuate somewhat for everyone.   I think its more likely to mean that your cytokines haven't really changed rather than your TH1s really having gone up in response to humira.   I'm not sure what I would do in your shoes - I expect if you are with Dr G he will recommend another 2 shots but its so difficult to know whether if you just stopped now and had steroids+intralipids whether that would be enough.  some ladies who don't see much/any reduction after 2 shots get one after another 2, but a small proportion of ladies don't seem to see much/any reduction even after more than 4 shots - its impossible to know whether you will be one of them.  Beer used to insist that even if the levels rose, the humira was benefiting you - and there are certainly a number of ladies whose levels go up/don't fall on humira but then still get and stay pg - so maybe he was right.     His approach seemed to be you tried up to 6 shots of humira and then if it still wasn't reduced you had ivig - and he said that there wasn't any reduction in success rates for those ladies who did that compared to those who did the humira and whose levels immediately fell and didn't have ivig... so given that we now have ILs, thats kind of like trying a few shots of humira, and then regardless of what your TNFa ratio says, going ahead with steroids&ILs?