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New diagnosis of AS

Posted , 6 users are following.

elizabeth40672
elizabeth40672

I have just been put on a 3month trial of Humira after being on steroids for nearly 2 years for what they thought was PMR (I could still have both). What I want to ask is how quickly will I know if this is working or not. Have those that take this drug found a huge difference in how they feel on a day to day basis. I am a little scared that it is reducing my immune system so significantly and only really want to take this if I begin to feel normal again. Is this possible? 

0 likes, 11 replies

11 Replies

  • tim411
    tim411 elizabeth40672

    Posted

    Elizabeth,

    sorry to hear.. but always good to know what is causing us so much grief (AS...)

    I have been on enbrel which works in a similar way to humira for 3 years. I haven't looked back. I went from barely being able to enjoy life (was on NSAIDS every day for 3 years.. barely allowed me to get by)to being able to play competitive soccer again..so you can imagine the positive impact its had on my life.

    it doesnt work rhe same for everyone but I get no side effects and I havent noticed much change to my immune system thus far bar the odd cold which is normal.

    from memory I stopped taking my NSAIDS maybe after 1 or 2 months of starting enbrel. still bit of pain or stiffness now and agsin it not enough to stop me from doing anything.

    hope it works for you. I guess my biggest concern is what am i going to do all my life meds wise (I'm only 28).

    cheers

    • elizabeth40672
      elizabeth40672 tim411

      Posted

      Hi Tim

      Thanks for your reply. It is great to hear that you have not really noticed anything as far as your immune system is concerned and wonderful to hear about you feeling so much better. My new normal has been this way for so long that I am really hoping that this makes a difference. I will just have to wait and see. 

      28! wow I was told I was young at 48, I am going to shut up now smile

      Best Wishes

  • patrick86962
    patrick86962 elizabeth40672

    Posted

    I have had Ankylosing Spondylitis for years and it’s gone misdiagnosed.  Finally I got put on Humira, also for ulcerative colitis.  Both are awful, joint pain was worse though.  Terrible joint pain.  Low back, ribs, feet, shin, toes.  Made it unbearable to do sports which I play a lot of.  Couldn’t lift heavy weights.  After about 2-3 weeks of Humira, joint pain 100% gone.  It’s been a God send for my life.  I was worried about lowering immune system as well, Haven’t had any issues with that though.  Also worried about low chance of cancers like lymphoma.  Mayo Clinic in Minnesota told me I have no higher chance of developing a cancer than anyone else.  It’s all about finding that magic bullet that works for you.  If it’s Humira, great, but don’t stop looking.  Your solution is out there.
    • elizabeth40672
      elizabeth40672 patrick86962

      Posted

      HI Patrick

      Thanks for your reply, yes cancer is a real worry for me but I hear that steroids are not much better. Good to hear positive responses from the Mayo clinic so thanks for sharing that. 

      Fingers crossed for Humira!

       

  • yanaras_mom
    yanaras_mom elizabeth40672

    Posted

    Hi Elizabeth!

    I know this is a tough thing to deal with and sometimes it’s hard because you want to know if the benefits out weigh the risks.  I have been on enbrel for 5 months, I feel a slight change but this can also be a trial and error deal, some biologics work better for people than others. So don’t give up, see if you can find the right one you’ll know after a month or so if it’s helping ! Best wishes 

    • elizabeth40672
      elizabeth40672 yanaras_mom

      Posted

      Hi Yanaras, thanks for your support. It is good to hear your story, I will keep looking if this does not work. 
  • lilly29834
    lilly29834 elizabeth40672

    Posted

    Hi Elizabeth,

    I am on Cosentyx and I noticed a difference after a two weeks. It is taken a little different than Humira though, it has a loading dose of one injection a week for 5 weeks before starting on a once a month injection. I think you should notice a change from the Humira certainly within the 3 month period if not within a month. What you don't want is to experience more joint pain, a lot more joint pain after taking it. If that is the case, tell your doctor and another biologic can be chosen. I used to worry about getting sick too from the immunocompromise but I can do so much more when I don't have the great pain.

    • elizabeth40672
      elizabeth40672 lilly29834

      Posted

      Thanks Lilly, it is good to hear that others are going through the same thing. I really appreciate your response. Yes I agree it is getting that balance between feeling well and the risks. I will make a decision at the end of 3 months and hopefully it will be an easy one. 
  • garyjm3617
    garyjm3617 elizabeth40672

    Posted

    Hi Elizabeth, I went from Enbrel to Humira. Felt the Humira kicked in bout six weeks. But was already on biologic. Just got pulled from Humira due to melanoma on lower back. Whether Humira caused it, who knows. Will meet with Dr to discuss what's next. I suspect Costenyx. I got relief from Humira but my left sacral joint did fuse bout half. Iritis is my biggest issue. Three months ago, lasered melanoma. 3 month check ok. Wish u luck. When they say practicing medicine that's what they mean.

    • elizabeth40672
      elizabeth40672 garyjm3617

      Posted

      Thanks Gary for sharing this with me. I am into my 3rd week and I think I am feeling less tired which is good and my steroids are moving down to 7mg which I think is a turning point. I will do the 3 months and decide after that whether to continue. 

      Sorry to hear about your melanoma, that is one thing that really worries me as the Rhuemy has asked me if I did get cancer would I blame him or myself for going onto Humira. I can only say that now I wouldn't but who knows if it ever happens what I would do? Glad to hear your 3mth check was ok. We can only do what we think is right at the time. who really knows what is going on inside?

       

  • garyjm3617
    garyjm3617 elizabeth40672

    Posted

    Glad hear steroids going down. I only had steroid injections (didn't work) and pain pills. Humira worked for me long time. Sacral joint though is partially fused maybe time for change anyway. I already have lot osteoarthritis in back don't need anymore spine problems. Im not on any pain meds now, physical therapy help with posture which helped with mobility. Hope Humira helps. We can only do one day at a time.

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