* Author Topic: Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)  (Read 192429 times)

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Offline Amily

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Re: Humira Experiences ~ Part 2
« Reply #170 on: 31/03/11, 23:39 »
Thanks urbangirl.
 
Thanks for your reply, Agate. Yes, I am with Dr G. I don't think more humira is financially viable, particularly since the first 2 didn't help. I am going to be having steroids and intralipids. I am supposed to have ILs twice during stimming.
 
My LIT test (after I have second fun session of that!) would fall on the week I start stimming. Is there really any point in having a LAD/LIT test, given I can't do anything about it? If the data would be useful I will get it done (though it will require another 4.45am start and yet more money!) but I am not sure if it will be useful.

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    Offline agate

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    Re: Humira Experiences ~ Part 2
    « Reply #171 on: 1/04/11, 08:25 »
    I waited until BFP and then retested LAD... then because my LAD was still on the floor, I had more LIT during pregnancy - so maybe you want to wait until BFP and then retest?  Also, for retests, could you do them at home and post them back to save on the early starts?  If you draw blood just before the post goes where you and then send it back special delivery next day by 9am it normally works from where I am out in the sticks.

    Offline Springflower

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    Re: Humira Experiences ~ Part 2
    « Reply #172 on: 1/04/11, 09:15 »
    Hey Amily and Angela - Tahsnk for your responding on the side effects, guess I'll just have to wait and see what happens with shot number two next week.

    Amily - Sorry to hear the Humira hasnt had much effect and that you've had a small increase. ^hugme^

    Offline Amily

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    Re: Humira Experiences ~ Part 2
    « Reply #173 on: 1/04/11, 10:56 »
    Good luck springflower...hope it works for you!
    Thanks for the suggestion, agate, but I can't get the blood drawn. I tried the hospital and they wouldn't do it in the NHS area. I ended up having to sit in a corridor on another floor as a private (untouchable!) patient. This was for a bloodtest rather than just blood drawn. My GP surgery couldn't make their mind up about whether they would do it or not, then the place is so full of elderly people that I couldn't get an appt till mid afternoon (when I can't be off work) anyway. (Why do the retired hog all the early morning appts!?) The nurse that does it is not in every day either. So it was all a bit of a disaster! Though it is a long journey, it still works out as simpler.
    One other question...I noticed that my test was done two days after I had the blood taken at TDL, Wimpole st. I was there at 8am so that seems a bit odd. Has anyone else had this? Usually seems to be the day after for Franklin rosalind lab. Thanks.

    Offline Dreams

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    Re: Humira Experiences ~ Part 2
    « Reply #174 on: 1/04/11, 22:48 »
    Amily
     
    Just to say that my levels went up after my first month of humira ^bigbad^ , I was told this happens quite often as my immune system was fighting the change...
     
    Went on to have 2nd month of Humira and they drop right down low...went on to have treatment and now have DS...
    Think my levels then are posted on the bottom of my profile ^hugme^  Good luck what ever you do..
     
    Now back on this Humira ride again waiting for prescription to come...
     
    Hope this helps
    Dreams

    Offline Amily

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    Re: Humira Experiences ~ Part 2
    « Reply #175 on: 1/04/11, 23:35 »
    Thanks Dreams!
    Unfortunately I don't have time to have more humira (or money, really) as am due to start downregging soon.
    Good luck with your next journey and lovely to hear it worked out for you.

    Offline urbangirl

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    Re: Humira Experiences ~ Part 2
    « Reply #176 on: 2/04/11, 14:25 »
    Dreams, I found your post really helpful, I might consider Humira for the next cycle now if this one doesn't work, but does any one know if initial worse levels after your first Humira shots always go back down or is the case that for some people (like Dreams) they do and for other, unlucky ones it stays high?

    Offline agate

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    Re: Humira Experiences ~ Part 2
    « Reply #177 on: 2/04/11, 14:39 »
    urbangirl: I think humira reduces TNFa ratios for a lot of ladies after 2 shots, for a few more after 4 shots and for a few more after 6 shots, but, from reading these boards over time, there are a small proportion whose TNFa ratio doesn't go down even after 4-6 shots - and some of those ladies still get pregnant.

    Offline angela123

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    Re: Humira Experiences ~ Part 2
    « Reply #178 on: 2/04/11, 15:10 »
    hi ladies I need a bit of advice........I got my results back today from my 1st humira shots it has come down from 41.5 to 33.2.........better but not good enough.....Dr G will defo ask me to take 2 more shots.....but he has already recommended LIT and intralipids, will not these treatments bring my TNFa down a bit more? money is very tight and we are booked to cycle next month....our last shot before DE in july.......any advice would be great........

    Offline helana74

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    Re: Humira Experiences ~ Part 2
    « Reply #179 on: 2/04/11, 15:47 »
    Hi Angela

    I too have high TNF at 38.7 but due to timing constrictions, we have opted not to have humira for this cycle as we were committed to have a DE cycle at the end of April and only got our chicago test results back just 9 days ago so Dr G is treating me with 3 intralipid drips (I had one last week) and I have to have one more on the 18/4 and the other on the 26/4 plus steroids, clexane and gestone.

    I know I am taking a bit of a gamble in not opting for the humira but I was paranoid about having a flare which wouldn't come down in time.  If Dr G didn't think the intralipid route would work then I am sure he wouldn't have suggested it for me.  I also had a look on the CARE Nottingham immune boards and lots of ladies at that clinic are being treated with intralipids for high TNF and the success rates are very encouraging.

    Maybe you could ask him whether this might work for you?

    H