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How long have you been on Cimzia?

Posted , 6 users are following.

esther77657
esther77657

I am looking for people who have been on Cimzia, to find out how long you have taken it before the side effects become too problematic.  I have been on it for almost 3 years but have a number of side effects (all of which are far better than the pain of RA).  However, the rheumatology nurse suggested that it may be time to switch to a different biologic, humira. Will the side effects take time to emerge again if I switch, even though many of them are exactly the same?  Any experience to share would be greatly appreciated. The other consideration in my decision is that I also have ulcerative colitis and apparently humira is the first choice biologic to treat that. 

0 likes, 11 replies

11 Replies

  • bhav68317
    bhav68317 esther77657

    Posted

    I was going to be starting it last week. My TB test was positive, so now cimzia has definitely being put on hold. I've had a chest xrays now waiting (don't know how long that will be) for respiratory to get in touch. It's one thing after another with RA, and all the pain, is another matter.

    • esther77657
      esther77657 bhav68317

      Posted

      I am sorry to hear that. I hope something works well for you soon. Thank you for your reply.
  • Gloria814
    Gloria814 esther77657

    Posted

    Hi Esther

         I dont know the answer regarding the side effects but I have RA and Crohn's/ colitis.   I started on MTX and can't tolerate it.  I saw the gastroenterologist Friday and she advised me to talk to the RA doc about Humira.  She also said it has been the most effective drug in her experience for bowel inflammatory disease.    The RA doc had also talked to me about it recently so is probably the next med I will try

      Good luck.   Gloria

    • esther77657
      esther77657 Gloria814

      Posted

      Thank you for your reply Gloria. I have been told RA and IBD go hand in hand. Lucky us, eh!! I have had RA for 28 years and have only recently been diagnosed with IBD (had the symptoms for about 5 years whilst they kept telling me that it was caused by anti-inflammatories).  Stay posted; perhaps our journey into Humira might happen at a similar time.  I hope it works well for you. All the very best. 
  • tony09890
    tony09890 esther77657

    Posted

    If you have been on it for three years and it's still working I'd be inclined to switch.   You can always revisit cimzia in another few years.   Staying on a particular med until it no longer works means you can never re-visit.

    • esther77657
      esther77657 tony09890

      Posted

      Aha! Thank you Tony.  You have answered a question I had about revisiting Cimzia. That is very interesting and will certainly influence my decision.  It sounds like it may be time to switch. I am reluctant because of the amazing results I have had on it (joint-wise). I am, however, comforted to know I could return to it if others do not work so well. Thank you for taking the time to reply. 
  • mary76396
    mary76396 esther77657

    Posted

    Hi Esther, I am on Cimzia and dont seem to have any side effects, however i have been on it for ten weeks and it has only just started to make a difference. I am also on Hydroxycloroquine. I was on MTX but was taken off it because of liver damage two weeks ago and the pain came back quite badly. I have just come back from a trip to see my Rheumatologist who have given me an injection of cortisone into my wrist to relieve the pain as it feels as though it is going to break if I use a twisting motion. She has also put me back on a reduced MTX dose and taken me off Hydroxycloroquine as that had obviously not held me up until the Cimzia kicked in. I am lucky that I have no known side effects but I have been having stomach problems and have just come back from a colonoscopy where they found diverticulitis. How do you find out if the other problems you have are because of the meds?
    • esther77657
      esther77657 mary76396

      Posted

      I don't think the bowel inflammation is a side effect of Cimzia (though it may be). However, I have 4 other symptoms that are each known side effects of Cimzia, each of which I did not have prior to taking Cimzia. I think it can be safely assumed they are side effects...sadly! I am pleased to hear that Cimzia is starting to have a positive effect for you...and no side effects. I have found it works brilliantly for my joints and I hope it does for you too.  Thank you for your reply Mary. 

  • gemma83759
    gemma83759 esther77657

    Posted

    Hi Esther, I've been on cimzia since January. I decided to persevere with cimzia since my last flare was so bad I couldn't have coped mentally and physically with another one like it. However I learned that some of the side effects were due to a lupus overlap! Now everything has settled down, no more side problematic side effects and the pain is bearable and the fatigue is 95% better. Should we b encountering any pain while on biologics? I learned that once u stop any medication once it leaves ur system then any side effects will stop. I think you'll need to wait for cimzia too completely leave u b4 starting any other medication. Hope this helps. G.

    • esther77657
      esther77657 gemma83759

      Posted

      Thank you for your reply Gemma.  Yes, I have been told I will need a period of time to flush Cimzia out before I start Humira. I am pleased to hear that the side effects could then disappear.  If it takes another few years before they.build up again, that buys me some time.  I have eye, sinus and skin problems which are all far better than pain. I'm in very little pain on Cimzia.  Are you still experiencing some pain then? 

    • gemma83759
      gemma83759 esther77657

      Posted

      Yeh I get a lot of intermittent pain. Last time I saw the rheumatologist nurse he was unsure if cimzia was helping a great deal at all. Seems I'm getting a lot of mini flares and if these r problematic (which they are) then the cimzia is not doing it's job. It's def helping the fatigue and general unwell ness but it's not helping me through the flares. Should we still need to b topped up with steroids and serious pain killers whilst on a biologic do u think? If we do then wots the point in talking a biologic? If we're experiencing major pain then the joints can still get damaged surely and that's why we take the biologics, to help reduce joint damage. Keep us informed Esther. G.

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