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Certolizumab pegol / Cimzia...anti TNF

Posted , 4 users are following.

catherine64111
catherine64111

Hi Fellow sufferers,

                                 I hope you're treatments are working and keeping you well..!! I've just been prescribed Cimzia injections following a nasty reaction to Benepali. Are any of you on this drug? Is it working for you? Has anyone experienced unwanted side effects which outweigh it's benefits/....I'm a bit wary of these drugs...but my condition is deteriorating quite rapiddly so I need to try something hopefully which will stop the progression.

Thankyou for your replies....

 

0 likes, 8 replies

8 Replies

  • linda23834
    linda23834 catherine64111

    Posted

    Hi Catherine, I just wondered what the unwanted side effects were with Benepali. I am also on it and would be interested to know? 
    • catherine64111
      catherine64111 linda23834

      Posted

      Hi Linda

      Sorry for the delay in replying ... my phone sent these to 'junk' without my knowledge and I've only just found them!

      The 'side effect I had which was most worrying was a feeling of being 'drunk'... when you really have to focus your mind to hang on to reality and perform normal tasks. This happened intermittently ... and it happened once when I was driving and I hit the kerb .. which scared me somewhat...and almost destroyed my confidence in driving... which, as I live in a 'rural area'I NEED to be able to drive safely. I also got Headaches and a very stiff  neck...but as that is also a symptom I suffer with my RA it's tricky to know whether Benepali was responsible. Though I can say since being off it I have had no more probs of that nature  !

      We're in a very unfortunate 'no win'situation...drugs with potential nasty side effects or the progression of this Awful disease !!!

      I'm STILL waiting to hear about Cimzia...apparently the 'Biological coordinator is 'behind with her paperwork... meanwhile I'm losing use of my Right hand which is deteriorating to match my left... so 'fun times' ahead for me now in the long term it seems!

      I hope this info helps you...and I hope u don't suffer as I did ...

      Take care

      Catherine 

    • linda23834
      linda23834 catherine64111

      Posted

      Hi Catherine, so sorry to hear you are having a tough time. It explains why when I inject myself in a morning once a week, then just try to get on with my day, but by early evening I start with a really bad headache and aching neck,  Plus more fatigue than usual. The following day I have got hot sweats and when I try to have a conversation with a friend whilst having lunch, I sometimes can't think straight and Have a problem stringing words together about what I'm trying to say!!! It sounds funny, but can be embarrassing.  I thought it was me, but as it happens every week, I don't think it is. I hope you will soon be on a new med that will help you. Take care.

    • catherine64111
      catherine64111 linda23834

      Posted

      Have you reported these symptoms to your Rheumatologist ? As this drug is so new they don't know what long term damage it might do. Please if you haven't told anyone DO ... if you read the side effects in the leaflet it does mention Neurologi cal probs.... 

      I hoe this helps... I know how you feel... wondering if it's 'just you' but it sounds very much like it could. E the drug affecting your neurological function... and we all NEED that to stay intact as everything else disintegrates !!

      Good luck x

    • linda23834
      linda23834 catherine64111

      Posted

      I mentioned it to the Rheumatologist nurse, she mentioned it the Rheumatologist. He said every drug has side effects and wanted me to try it for another 6 months. I will mention it again next time I'm at the Hospital Catherine, thanks for the advice. 😊

  • esther77657
    esther77657 catherine64111

    Posted

    Hi.  I was on Cimzia for a few years and I had very positive results.  I am now on Humira since being diagnosed with Crohn's too and Humira is considered better for that.  But whilst I was on Cimzia, the only side effects I had were blocked sinuses (treatable) and some psoriasis (treatable).  The benefits far outweighed these minor issues. I hope you are OK with it and that it provides relief from your symptoms. 

    • Gloria814
      Gloria814 esther77657

      Posted

        Hi Esther

          Sorry that like me you suffer both Crohns and RA.   I do hope the humira works for you.   I had negative reaction and stopped after 3 doses but many tolerate it very well.  My GI and RA docs discussed which meds were best. They did disagree on which to try after humira since Cimzia is quite similar the 

      GI doc didnt want to go with that drug.   I think there were one or 2 other drug choices/   as yet I didn't want to start the IV medications but I imagine this eventually will stop working and I will need to try that or one other drug --I think it was stellara --not sure of spelling .   One day at a time----hope you do well on it

  • Gloria814
    Gloria814 catherine64111

    Posted

      Hi Catherine

         I started Cimzia about 3 months ago.   Initially I didn't think it did much--first month but since then I have had wonderful results.   I was very afraid to start it b/c I had bad reactions to Humira and they are similar drugs.   My only issue is that I also have Crohns and Cimzia is not helping that although I am a bit better than 6 wks ago related to that.   Only been 3 mo. but no side effects and no signs of infection

       It is awful when you read what can happen on these medications but I was not able to tolerate MTX and since I have insurance I could switch to biologic.  3rd option was IV medication which I was more fearful of.   So I do hope you have positive results.  I have no pain at the site as I did with humira and I think easier to inject than humira.  But if Humira worked I would have continued

    Good luck 

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