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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 #purpleproject Moderator

      Wow! The Remicade trials!? This is really cool. I remember being one of the first people to be put on Humira when it was first put out & I thought that was cool!!
      Kelly, Team Member

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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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  • By MisCellaneous

    Hi, I also recently had trouble with Humira. I started it after I was hospitalized for acute pancreatitis from the azathioprine which I had been taking for 2 years. I stopped taking Humira after a few months because it made my Crohn’s much worse and on top of that I had a whole list of side effects: extreme fatigue, headaches, dizziness, heart palpitations, nose bleeds etc. I am not taking anything currently and I feel better than I have in a long time. I also have learned over the last few years to stay away from gluten and some other trigger foods, I have discovered the miracle of honey and slippery elm tea, and I have learned better stress management/coping techniques. I have also started seeing a different gastroenterologist that actually listens to me.
    Humira was also prescribed to me a few years ago when I was in a Crohn’s flare up that culminated in an emergency colectomy, I now have a permanent ileostomy. That’s a long story but Humira made things worse for me back then too. It might also be interesting to note that Abbvie is being sued by the state of California because of shady incentivizing practices re Humira.

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  • By Brooke Abbott Moderator

    Hi CrohnsMN,

    The best advice I can give is to research other treatment options and don’t get pushed into something you are uncomfortable with. Now, that being said, it is very possible that you have developed antibodies to certain biologics and/or an allergic reaction. The disease is so personalized, that what works for one person may not work for another. It is also important to remember that some biologic drugs will help heal somethings, but not all things. So you may see some extra intestinal manifestations pop up while on a particular drug. But that could because that particular condition is not covered under the drug you are on. It’s important to bring up all of your conditions to your GI while discussing treatment options. Also, consider bringing in your whole team in on your treatment plan is helpful.
    -Brooke
    (InflammatoryBowelDisease.net Team Member)

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  • By Steph

    Hi crohnsmn, Thank you for your post. Let me assure you, you are not alone in your feelings about biologics. I have Crohn’s, diagnosed in 2000 and have tried/failed Remicade-anaphylaxis on 3rd infusion, Imuran-allergic, methotrexate-allergic, Humira-antibodies, Cimzia-drug induced lupus/allergic, currently on Stelara. I’ve learned that every case is unique, diet/stress reduction are key. I continue to have joint/body pain, skin issues, since starting these meds. I’ve taken medication breaks, for 4-6 months, while clearing my system before starting a new treatment. Each time my Crohn’s would flare with a vengeance. The meds won’t cure us, as we know, but they do hold a full blown flare at bay…..sometimes. My question to the drug companies and FDA, is….
    Why offer a drug for Crohn’s treatment (Cimzia) yet NOT have access to an antibody/efficacy test, to determine if said drug is effective/toxic? Why doesn’t the US/FDA have an antibody/efficacy test for Cimzia, while EU and Australia do offer an antibody test? It is reckless to give a knowingly “Black Box” labeled drug without the ability to check for antibodies prior/during treatment. I question the FDA’s motive with this drug. Is this really about getting patients needed treatment for a debilitating disease or is this about the drug companies and FDA making money? ($17,000+/ 8 week dose) There should be transparency with these meds. I caution people to do YOUR investigation of these meds before starting a new treatment, make sure there is an antibody/efficacy test for a new drug you start. I will forever be changed by these drugs….but I am alive and still fighting for better health. Best of luck on your health journey.

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  • By MNmusicmom

    No, you are not the only one. I was on remicade for 1 year and about 8 months in I started developing terrible joint pain, changes in my mood, neuropathy, and high liver enzymes. None of my doctors wanted to blame it on the remicade, so I continued 4 more months until the morning after my last dose, I had lost all feeling in my hands and feet. Then I had to go through many uncomfortable tests before they actually believed me and agreed to stop the remicade. All the issues due to remicade have improved, but there has been permanent damage to my finger joints and nerves, so I will have life long pain in my fingers and tingling in my hands and feet. I had surgery to remove all the active disease and got an ileostomy, but now have pyoderma, so will probably have to go on another biologic.

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  • By CrohnsGma

    I’m posting on behalf of my 15-year old grandson diagnosed with Crohns August of 2017. Initially treated with methotrexate, then added Humira since remission was lacking. Almost immediately he started having pain in joints and bones, which got significantly worse when Humira dose was increased. Still no remission. Cut back to original dose without worsening Crohns symptoms. Pain in limbs reduced now but still present. Recently diagnosed with CRMO-inflammatory type of osteomyelitis. Ideas?

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    • By thedancingcrohnie Moderator

      Hi @crohnsgma,

      So sorry your grandson is going through this. I too experience horrible joint pain while on biologics. Honestly, they only when away once I stopped the treatment. But, have you tried taking tumeric supplements or Wobenzym supplements? Maybe that will help?

      Always dancing,
      Elizabeth (team member)

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  • By MisCellaneous

    Since the last time I posted I had a bad flare up (ESR80+). I started LDN (Low Dose Naltrexone) and it started working within a few days!!! I have been taking it for a few weeks and the only side effects have been some drowsiness and vivid dreams. It isn’t approved by the FDA for the treatment of Crohn’s, so it is not covered by insurance. It is very inexpensive and there are doctors that will prescribe it. I had to get my prescription filled at a compounding pharmacy and they said that a lot of people with autoimmune diseases take LDN. I have read patient’s reviews of LDN and some have said that it is the only IBD drug that they aren’t afraid of, and I would have to agree.

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    • By thedancingcrohnie Moderator

      Hi @miscellaneous,

      Thank you for sharing this. I have heard of LDN and have heard good things about it. Glad it has been working for you. It is so important for us to share what works, because as we all know, IBD is all about trial and error when it comes to treatment.

      Always dancing,
      Elizabeth (team member)

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  • By CrohnsGma

    Thanks for the ideas. We had an appointment with his doctor yesterday, and she agreed that both turmeric and LDN might be beneficial. So we will give them a try as adjunct therapy. She has a source for the LDN, but I need to find one for the turmeric.

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    • By MisCellaneous

      Hi CrohnsGma,

      So glad to hear that you guys will be trying LDN.
      I have tried turmeric and it was a bit too harsh for me, but everybody is different. I have had good results with boswellia (Indian frankincense), it has gotten more attention recently for being affective for IBD and other autoimmune diseases.

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