Biologics?

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I started taking Humira last summer. It was great, my back pain (almost) disappeared . I started to realize how much my back pain had actually affected my life. I really liked the Humira. At first I had some side effects like hair loss and bruising but that got better after a month or so. But then it all got worse and worse. It was like I had a constant cold. I got the flu shot and had the worst flu of my life. This spring I started to get more and more fatigued. They did lots oflood work, x rays and all kinds of tests. I had a severe vitamin d deficiency and fit supplements. It got better for some weeks but then it got even worse. One day i woke up with chest pain. I thought it was gastric reflux or something first. Atvdinner time I couldn't breathe so I went to the ER. Now I had fluid in the lungs, around the heart and my lungs was covered with something they didn't know what it was. They thought it was cancer and I was hospitalized. After a few days my breathing got better and better and they said it was a side effect of humira. That was in June and I haven't been on humors since then.

Now my back pain hurts again and the fatigue is really bad. I've just got informed that I'll start taking embark instead if humira.

Has anyone been on both of these drugs and noticed any differences between them?

I'm afraid I'll get sick again.

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6 Replies

  • Posted

    Sorry for all the bad typing.. doing this on my smartphone and I'm really tired..

    I'll start on ENBREL soon...nothing else

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  • Posted

    Hi so sorry you're having a bad time. Par for the course isn't it with AS. I'm now 30years down the line diagnosed at 26 and never had a pain free day for as long as I can remember. I'm not on any medication. Recently I asked my gp to refer me to a rheumatologist who specialises in AS. Previous one for 6years just ticked boxes. Did have an MRI but he wouldn't prescribe anti tnf which I wanted to try. I feel like I've had no support from anyone whatsoever. People don't have a clue what we suffer and I'm.sure are always tempted to say " well you look ok to me" I really just want to know where I'm at with this disease. Humira sounds like it causes too many other problems haven't we got enough already. Good luck with enbrel hope it works for you.

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    • Posted

      Gillian, I am wondering why your md won't prescribe a  tnf for you? That's why I asked you if you live in the US. Those class of drugs are the very drugs prescribed for AS patients.  Like you are. You should have access to appropriate treatment.  They seem to really work for at least 50% of patients! You deserve the chance to be one of them.

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    • Posted

      Seems like you need to find yourself a AS specialist. Don't be afraid of Humira I think the side effects are very individual. What did they say about your MRI result? I rhemy told me that if the fusing of the vertebrae had progressed too much the biologics would do no good. For me the fusing had started in the SI joints and some of the lumbar vertebrae, the SI joints where the worst, but no one had totally fused

      Good luck!

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  • Posted

    Holy crap!  That is a horror story!! I'm so sorry, how are you feeling now?  I am into my second month  with Humira, don't feel better (maybe worse) not even for 1 day did I feel better, so at the 2 month mark I am quitting to avoid all the side effects you just mentioned.  I think you should try another biological.  Maybe wait a bit to build up some immunities?  I don't know the answers!! I know that I will try another one too, after Humira.  The pain insists that I have no other choice sad

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    • Posted

      I don't know if I'm just out of luck you know... I don't think you should quit the Humira treatment without talking to your rhemy first. I really, really liked the good effects of it. Like waking up in the morning after a good nights sleep and being able to put my socks on...

      I did an x ray yesterday. Found out that finally the lungs look normal but I've still got pericardial effusion (excess fluid between the heart and the sac surrounding the heart). I can't go for a walk or anything, I've still got trouble breathing and after a 10 min walk I get a bad cough. My back pain is getting worse because I can't exercise and the NSAIDs have never really helped me. I don't know now if i can start taking Enbrel or not since there's still fluid in my chest. I am glad I don't have lung cancer though.

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