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If you could try Ritixumab would you?

Discussion in 'General Treatment' started by ramakentesh, Mar 19, 2012.

  1. ramakentesh

    ramakentesh Senior Member

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    I am seeing my Rheumatologist tomorrow and last time we spoke he mentioned all the disease modifiers he had used on Ankylosing Spondylitis (which I developed at the same time as POTS/CFS). One was Ritixumab. he is however pushing for TNF alpha inhibitors like Humira.
    I was going to jump on the Humira but then I heard some scary stories about development of MS or the local guy that died 9 months after starting it of blood cancer. While Im far from well and I guess I dont have a huge amount of quality of life to defend particularly during relapses, I seriously dont need any other problems to deal with...
    So Im wondering whether I should pursue Ritixumab for AS with the chance it might also improve POTS??
     
  2. ukxmrv

    ukxmrv Senior Member

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    I did well with Humira but it was no cure for me and the doctor I was trying it through sadly passed away. Would be very happy to try Ritixumab. It's been nearly 30 years of trying new things. Access and the cost are very important factors as very little available in the UK as clinical trials or on the NHS.
     
  3. fla

    fla Senior Member

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    Montreal, Canada
    This thread has lots of good comments about your question.
     
  4. Esther12

    Esther12

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    If it was a treatment for another condition I suffered from, then the positive CFS studies might be enough to have me favour it over other alternatives. It could be worth taking a copy of the CFS/Rituximab paper with you when you talk to your doctor... although there is a danger that any mention of 'CFS' will cause more trouble than it's worth.

    Good luck with it, and I hope you find something that helps with your health.
     
  5. ramakentesh

    ramakentesh Senior Member

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    LOL - I dare not mention CFS or expect ridicule from this doc!
     
  6. ramakentesh

    ramakentesh Senior Member

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    Did you have any orthostatic intolerance type symptoms and did it effect them?
     
  7. ukxmrv

    ukxmrv Senior Member

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    Hi there, I think I answered on your other thread. Yes I do have OI issues and I didn't notice any increased problems. Good luck with your decision.
     
  8. taniaaust1

    taniaaust1

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    Id be willing to try Ritixumab even if I didnt have another condition other then ME. Its probably the only drug which is looking hopeful at helping us. (I wouldnt trial Ampligen thou, those patients all seemed to go back to how they were originally, Ritixumab is looking more hopeful).
     

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