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  3. Polymyalgia Rheumatica and GCA

5 Replies

  • EileenH
    EileenH

    Posted

    To add to the above information, I have asked someone who will be involved with one of the centres. She told me that the criteria to be included in the study will be newly diagnosed AND relapsing patients who have a positive temporal artery biopsy. 

    So if anyone has been experiencing difficulty getting off pred and having relapses as a result it will be worth speaking to your consultant if you are interested. You will have to be able to attend the study centre of course and I'm not sure where they are although Leeds in the north of England will almost certainly be one once their documentation has been sorted out/approved.

  • old_nanna
    old_nanna EileenH

    Posted

    eileen , i havent answered for a long while , you know i was wondering where all this started , it seems an epidemic of this only started about 3 or 4 years ago , nothing much was known about it  im clear of polymialgia but oh the muscle waste is sooo painful at night , im refusing to just take pain killers , i need a cure lol im seeing my doc again on friday and will demand some satisfation lol not just medication lol i read about so much suffering on this site its a pity all the doctors dont get together and just read whats here , , anyway i hope you have a lovely christmas and to all out there a pain free one , thank you for your advice x 
    • EileenH
      EileenH old_nanna

      Posted

      No - been around a long long time, just given different names. PMR was first described in 1888 by a Dr W Bruce - and called senile rheumatic gout. They knew that some people with it would develop further symptoms, be very ill and some went blind. GCA was described as what we know it as now in the mid-1930s by a doctor in Germany but that was suppresed later as he was a member of the Nazi party.

      "i need a cure lol im seeing my doc again on friday and will demand some satisfation"

      I'm sorry - you can demand all you like, there is no cure. Just like there is no cure yet for Type 1 diabetes, multiple sclerosis, rheumatoid arthritis and many other disorders that are autoimmune in origin. The best that can be done at present is management of the symptoms - and at least in GCA prompt management with a high enough dose will prevent you going blind, and for most people the autoimmune disorder burns out eventually. That doesn't happen in diabetes or MS.

      It sounds harsh - but it's the reality.

  • JanSP
    JanSP EileenH

    Posted

    Although I keep relapsing and had a positive temporal artery biopsy in 2009 I live in the U.S. so this won't directly help but maybe it will in the future.
    • EileenH
      EileenH JanSP

      Posted

      There will be centres doing the trial in the USA too - these drug trials are almost always multi-national. With a rare disease they have to be or it would take years and years to get a meaningful number of patients who qualify for them. It is always worth asking or doing a google search - big centres such as the Mayo or Cleveland clinics will almost always be participating.
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