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Abatacept (Orencia)

Posted , 4 users are following.

Amnesia3637
Amnesia3637

Hi All. Am due to begin a course of Abatacept - one of the few drugs I haven't yet had. I couldn't tolerate Infliximab or Etanercept as although my disease was amazingly well controlled, both drugs gave me Lupus as a side effect. I had Rituximab for two years but that produced adverse blood test results and so I had to come off that too. The consultant is worried that as I'm only on 6mgs of Prednisolone, my joints are being damaged and I need another heavy duty drug as I have had severe RA for 25 years. So Abatacept is being proposed. Wondered if anyone is on it and how you find it? Are there any horrible side effects? I shall be self injecting which is fine but would like to hear of anyone's good or bad experiences. Many thanks in advance.

0 likes, 9 replies

9 Replies

  • mrsmop
    mrsmop Amnesia3637

    Posted

    Have you looked at the Arthritis Research UK website?  They mention it there
    • Amnesia3637
      Amnesia3637 mrsmop

      Posted

      Hi. Yes thanks, I have. Just like to know from others who have actually taken the drug what their experience has been.
    • mrsmop
      mrsmop Amnesia3637

      Posted

      Try the Health Unlocked forum, the NRAS is involved there and it is very active
    • Amnesia3637
      Amnesia3637 mrsmop

      Posted

      Thanks again. Had forgotten this site so will give it a go.
  • mrsmop
    mrsmop Amnesia3637

    Posted

    I was going to pm you the link but you don't have the messaging facility
  • CA-Lynn
    CA-Lynn Amnesia3637

    Posted

    Don't know what that means, that you can't "tolerate" the other drugs.

    Also, I have never heard of one of these drugs causing Lupus. Doesn't make sense. Maybe you just hadn't been diagnosed with Lupus and assumed it was the drug?

    • Amnesia3637
      Amnesia3637 CA-Lynn

      Posted

      I suspect from your rather dismissive comment you aren't a consultant rheumatologist.  Drug-induced Lupus is a known side effect of the anti-TNF medications such as Enbrel and Infliximab and both times I have been prescribed these drugs I've developed the above and am therefore 'intolerant' of them. I am a retired nursing sister and would not post these comments lightly as they could be misleading for others. 
  • h76133
    h76133 Amnesia3637

    Posted

    My younger sister has been using Orencia IAbatacept) for years and it helped her RA. Two years ago she developed a severe rash, underarm, groin, chest. It was blistery, painful and very uncomfortable. Dermatologists couldn't find a cause, one suggested medication after she asked whether this could be the cause. Nothing was done. Severe tender abdomen was another symptom, nothing was done. She now has level 3,4, lymphome, widespread cancer and is undergoing very severe chemo doses in the hope that this will help. Her specialist, when she asked him why this wasn't followed up, replied: no need to look to the past, the chemo will fix it. Don't let any odd symptoms go unexplained., Demand tests to exclude severe disease. Don't be patronised.
  • goggi
    goggi Amnesia3637

    Posted

    Hi Amnesia3637,

    Just wondering if you ever started on the Orencia and if so how did you get on with it?

    I've been prescribed it today and would love to know if it worked for you?

     

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