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Trouble with biologic drugs

  • By crohnsmn

    I am looking for others who gave become much worse since using biologic drugs. I know I am not the only one I hear it from nurses in the hospital and waiting rooms meet people who know of someone. Yet all the forums seem to be sponsored by drug companies. Could things be sensored? I have had crohns from 26 years and tried 4 biologics. I never had so much as a mouth sore in 24 years with crohn’s before trying a biologic. Since I have had iritis, erythema nodosum, pyoderma gangrenosum, horrible pain in my joints. A severe headache and 3 aneurysms in my brain found after drug discontinued and headache gone but previous scans did not show them. U have been much worse with fatigue, pain and concentration. Are there others with previous experiences these symptoms and stiff body pain and the “drug induced lupus” is supposed to be reversible but I would give anything to feel as good as I did before the biologics. Is there anyone out there to relate. My medical advice is to take a 5th biologic drug but I am scared to do that. What I’d I add something worse to the above list. I know my experience is rare and I had short periods of time that the biologic worked great without side effects I am not saying they are bad for everyone but for some I worry they are extremely dangerous I think my immune system has been made more aggressive by them

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  • By Piper

    Wow! I used Humira for 5 years, and then developed an allergy to it. While taking it, I did not have a remission, but I did have a couple of days a week when I would be able to get out, and run errands, and what have you.
    I stopped it with the allergy, and now take Cimzia. It is not helping me the way Humira did, but I do not think it is hurting things either. I have one of the more severe cases of Crohn’s, and I know, after 35 years, that there is just so much any medicine can do.
    That said, if any med makes you feel worse, that is not OK! I don’t blame you for feeling apprehensive about starting another biologic. They are miracle drugs for some, and not so much for others. If you were to start another, and began feeling worse, is your doctor supportive of you and your knowledge of
    your your own body

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  • By Piper

    Oops, sorry. Is your doctor supportive and respectful if your knowledge, as the one who deals with this every day? Enough to support your decision to stop it if you feel worse?
    It is so important to have a doctor who really listens, and respects the patient.

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  • By civey

    I have had Crohn’s fo over 40 years. I was one of the first people to be in a Remicade trial. I had a horrible reaction resulting ina swollen face to the point that my wife didn’t recognize me. Eventually I ended up with respiratory arrest. They switched me to a Humira trial and now I’ve been on it for 10 years but it has not put me in total remission. Two years ago I had to have stoma revision surgery and they to remove an additional foot of small bowel because of active Crohn’s. I’m still on Humira but I would say that it only controls some of the symptoms. My GI thinks that I still have active Crohn’s and is considering switching me to Cymza. Don’t know yet. Still all in all, life is good! You just have to keep fighting.

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  • By Julie Marie Palumbo Moderator

    Hey all!

    The one thing that I have learned and that has kept me sane during my Crohn’s journey is that new medications are constantly reaching the market, and improving over time.

    I have been on Remicade (allergic), Humira (lost response), Imuran (lost response), and Cimzia (did nothing) that didn’t work, and just when I thought all options were gone, I was put on Entyvio and it got me into remission. I am actually now on Stelara (still in remission) and it is much less expensive, easy to administer, and I love it.

    So, if something isn’t working for you, do not lose hope–the medication that works for you may be available in the near future! 🙂

    –Julie (InflammatoryBowelDisease.net Team Member)

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  • By thedancingcrohnie Moderator

    Hi crohnsmn,

    You are definitely not alone in this! I was on Remicade, Humira, and Entyvio and none of them helped me. I was hospitalized while on all of them and I was always dealing with symptoms and just coasting through life. I would be apprehensive to start a new biologic too with your history. Wondering if you do anything on the holistic side? I started doing celery juice every morning and it was such a game changer for me. Felt the best I have ever felt.

    Always dancing,
    Elizabeth

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