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On biologics with pain?

I’ve been taking Humira for five months now, and although I have much less flares than before the treatment, I still wake up with a lot of pain and stiffness.
Do you take biologics and still feel some stiffness or does it go away completely for the treatment to be successful?

  1. JPJP: The answer is both yes and no. I have used biologic medications for 20 years. Part of the time I feel perfect. Other times I wake up stiff and hurting. you asked if it goes away? Yes it can but not a first. Think of inflammation as something that builds in your system. Just as inflammation builds it will not simply go away. It takes time and the right medication. Not all biologic medications work for all people. For me I have used five different ones. Each worked, some better than others and some quicker than others. My first one I used over 6 years and this one I have used for almost 8 years. I liked the first one the best, and the current one the second best.

    So the bottom line is that it is a matter of degree. I do not know a single person who uses one that says yes they no longer have pain, or are not tired, or have swelling. Biologic medication is wonderful. But it is not miraculous stuff. You use it, have a good dialog with your doctor, track symptoms and then evaluate progress.

    rick - moderator

    1. Thank you, Rick! It’s great to be able to hear your experience and input.
      It makes sense. Only thing is that I have a memory that the last time I took Humira - for two years - a few years ago, I went into full remission and was pain free. But to be honest, I’m not sure of that, I should have a pain journal.
      Anyway, now I am fearing going to bed. I hate going to sleep wondering how painful it’ll be at 3am then again at 4. What level of pain will interrupt my sleep and make me make the worst, most awful faces as I try to move.
      Is that how everyone here feels? Comforting to know we’re all warriors together!

      1. , I also feared sleep as I would have the same issues. I got a Sleep Number mattress, and it has helped a great deal as I can adjust it for my needed comfort level every single night, and sometimes during the night if I wake up in pain. Nothing seems like it will completely fix the night time pain, but this makes it so I don’t fear going to bed every night!

      2. thank you for the tip! I am overseas, in Brazil, and unfortunately can’t purchase this mattress. But my current mattress is actually really good and any night spent in my kids’ beds or out of town will make it worse, indeed. Your is a good reminder, though, that I need to have the best set up possible to go to bed 😀

    2. Hi all, not much of a help but just adding on to the experience in this forum. I’ve been on Arcoxia (NSAID, 90mg) on and off to manage my pain for almost 2 years but the frequency of usage has increased due to the flares/pain/crackling neck especially. Nowadays I take Arcoxia almost every alternate day and I’m worried about the side effects. My rheummy has also asked me to go on biologics but I’m worried about the side effects like cancer and the fact that I’ve to be on injections forever (if I don’t go into remission). Also, can we take biologics forever if our AS does not go into remission? Seems like choosing a lesser of 2 evils (NSAIDs also have their fair share of side effects) and I’m torn till date. With my next rheummy appointment coming up in a month, I’m sure this question will surface again. I sound like a worry wart here but hope to seek some thoughts / advice from the forum.

      1. I cannot help your anxiety, i can only report my experience. I have used Biologic medications for 20 years and have never once regretted it. They have been a life safer for me. They literally gave my life back. I have never heard of a long-term increased risk for cancer for those who use them.

        Many people mistake that Methotrexate can cause cancer, because it was originally used in and even today is sometimes used for the treatment of some cancers. MTX like all biologics are immuno-supressants. They work because in RA the autoimmune system overreacts in our body. The medications suppress this over reaction. The link to cancer is that MTX has been used to suppress the production of some cancer cells. Albeit at much higher doses then we us today in the treatment of RA.

        As time has gone on other immuno-supressnts are being prescribed in some types of cancer particularly those that involve inflammation and other conditions like MS, Diabetes, Lupus, blood cancers etc.

        However, the fact these maledictions are used in a variety of disease areas has nothing to do with causing these diseases if they are used correctly.

        I advise you to consult with your physician about your concerns and then make the best decision.

        rick - moderator

      2. thanks for your post. I am actually very upset still at every Humira injection and it’s possible side effects. Still, I recognize that this medication is a blessing for me and that there is no other way.
        , I strongly feel keeping the disease inactive is the most important thing at a certain point in this condition. For me, now, it is crucial to stop my AS from progressing, as I already have serious side effects from it and a lot of damage…

    3. Great question. Personally, I still feel stiffness and pain on Cimzia, my current treatment. When I was first diagnosed and started Humira, I was in true remission—meaning I felt almost no symptoms of the disease—for about seven months. However, I eventually had a flare and came out of remission, and then the medication never worked quite as well for me after that. All of the other biologics I've tried have reduced my symptoms significantly but not totally, so yes, I do wake up feeling pain and stiffness. Sometimes it's severe, and other times it's more manageable.

      I don't think the majority of people experience total remission, but there are definitely some—and others experience partial remission. Some doctors use the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) and/or Ankylosing Spondylitis Disease Activity Score (ASDAS) to determine the efficacy of treatments. Does your doctor have you fill out a survey before each appointment to rate the severity of your symptoms?

      Here is some more info about AS, biologic therapy, and remission:

      I hope waking up today wasn't too painful. If your pain is severe enough to disrupt your sleep, I would definitely bring it up with your doctor. Sometimes they will suggest you add a second medication to your regimen, or switch meds altogether. I'd love to hear how you are doing if you're up for sharing, since it's been about a month since your original post.

      -Diana (Team Member)

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