Humira not working anymore

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I've had Crohn's disease for over 40 years and have recently been told that I've built up antibodies against Humira. I recently had a flare and wondered why the drug wasn't working. I was on it for about two years and it really helped! I go to the doctor tomorrow to get on something different. I just don't know what new drugs are available.

Now I am having extreme joint pain - especially in my S.I. joints, hands and wrists.

I have been trying to live my life as normally as possible but over the past 10 years I have become a recluse. I simply can't leave my apartment most of the time. I am 63 years old and want to spend time with my two sons but it involves travel which is so hard for me.

I just want to say to others who have Crohn's that you can still have a life. I was told not to get pregnant 31 years ago but i have two loving, careing, amazing sons.

My sister was just diagnosed with Crohn's disease last fall. She is currently on Humira and having pretty good success. I worry for my son's wondering if their is some genetic link. I pray that they stay healthy!

I would love to here from some older folks with Crohn's. Maybe we can trade information and stories.

It's very helpful to hear about ways others have coped. 😕

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6 Replies

  • Posted

    Hi Allie

    I was diagnosed with Crohns about 4 years ago.  i am now 64.  I have been on Pentasa mainly but soon they want me to go on a monthly injection (when I next flare up) Im loathe to do that as it supresses your immune system and I dread coming down with every cold and chest infection going!

    I do know how you feel.  When my Crohns acts up I too dare not leave the house or at least I have to know how near a toilet will be because I get very little warning.  I have even had accidents in my own home and my toilet is less than 10 foot away.

    All I can say is take some spare clothes and wipes with you and just try to visit your sons.  its lonely when you cant mix and it doesnt help us fight this disease if we are mentally feeling low.

    Good luck with your next new meds

    Linda

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    • Posted

      Thank you for your input, Linda. It helps so much to hear others battle stories. I go to the doctor today to start a new drug (don't know what it will be). I've been on so many drugs over the years and they either didn't work or I was allergic to them.

      Thank you again!😊

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  • Posted

     Hi Allie

       Sorry to hear your Humira is no longer working.  I have Crohns and RA so i can relate     From my reading I have been informed that these biologic drugs do stop working after a certain period of time though not in all cases.  I was on Humira but couldn't tolerate it and was on Cimzia almost  a year and had side effects so now just Pentasa but not working     I hope they can find something to help you soon

         I too worry about my 2 children and 3 grandkids inheriting an autoimmune disease since I have 3.   My parents had none and neither do my bro or sister so I just pray that my kids don't inherit the genes.  My Aunt had RA but not her parents or any of her 7 siblings so it's  not everyone with the same genes gets it 

        I am 70 and have had RA maybe 2 and half yrs and Crohns 15 yrs or more.  Quality of life is not what I had hoped for.  Home more than I want to be and in a steady flare with bowels and joints so need to return to MDs for more decisions and tests   Bummer  : (         I hiope you have great success with your next medication    

     

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    • Posted

      Thank you, Gloria. It helps so much to hear from other people battling Crohn's. It's been such a long haul for me but hoping new drugs will help.

      Thank you again!😊

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  • Posted

    Hello Allie, sorry to hear your medicine is no longer working and have to go on a new drug. I pray to Jesus that this medicine will be the last medicine and you will receive good results from it.

    I too have had Chrons for 41 yrs. I am now 61, at the time of diagnosis I was barely 20. I had been diagnosed with Ulcerative Colitis at first which took most of my colon, ( I'm pretty sure I was misdiagnoised ). 6 months later I return to GI was told I had Chrons, at that time the complete colonectomy, now I have a illeostomy. 20 yrs later placed on Pentasa and have had NO flares up until about 8 months ago. When doing a checkup with GI (because earlier put on Zorelto for blood clot in lungs, my Primary Dr found through blood work hemoglobin was low, so sent me to GI to see if I had any internal bleeding) GI Dr did a endoscopy, he wasn't sure, did a pill cam, still wasn't sure, did a small bowl study, sent the findings to University, and the results came back as a early sign of a flare. I wasn't even aware of being sick. So in November of 2017 put me on Humira, 1 month later put in hospital 5 days test for bleeding, taken off Zorelto, Came home still bleeding off and on, it got severe beginning of April so back to hospital, more test found a bleeding Ulcer on lower end of illeium, Been off Humira for 2 months for dental surgery, suppose to go back on middle of May. Not sure if I want to. Seems like bleeding started when on Humira. I have more issues with tummy now then I did before I went on it, but then again only on it 5 months. Now I'm on steroid Budesonide for 2 1/2 months then go back to GI. Bleeding stopped so will see what's next. I want OFF this rollercoaster now.

    Sorry this is so lengthy but wanted to tell my story. I'm still not convinced that I needed to go on Humira. I wasn't sick, I think it was the Ulcer. I mean no sickness for 40 plus yes then BHAM!

    I'll keep you in prayers for successful treatment plan.

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    • Posted

      Sandra, thank you so much for sharing your story with me. It helps to know what others have been through. Thank you for your thoughts and prayers!
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