RE: Stills - Which CCG's will prescribe Canakinumab?

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itsthenoise
itsthenoise Bots, Non-active member Posts: 4
edited 6. Jan 2020, 17:15 in Living with arthritis
I wonder if anyone knows of any CCG's in the UK that will prescribe Canakinumab for Stills?

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  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -0001, 00:00
    Other meds are available :wink: I was diagnosed with Stills over 50 years ago. I / they call it RA now but I certainly had the rash and fever back in the day.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • itsthenoise
    itsthenoise Bots, Non-active member Posts: 4
    edited 30. Nov -0001, 00:00
    stickywicket wrote:
    Other meds are available :wink: I was diagnosed with Stills over 50 years ago. I / they call it RA now but I certainly had the rash and fever back in the day.

    Thanks for your reply, it's really appreciated.

    I know this illness is slightly different in every person that has it, and unfortunately Canakinumab seems to be the only one that works.
  • itsthenoise
    itsthenoise Bots, Non-active member Posts: 4
    edited 30. Nov -0001, 00:00
    stickywicket wrote:
    Other meds are available :wink: I was diagnosed with Stills over 50 years ago. I / they call it RA now but I certainly had the rash and fever back in the day.

    This illness is apparently different with everyone that has it.

    Unfortunately Canakinumab seems to be the only one that works.
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -0001, 00:00
    It's a bit difficult to try to help as you don't give much info. Things I'm wondering are:

    Has your own rheumatologist stopped prescribing it? If so, what reason (s) were you given?

    Or, have you been prescribed it while living abroad and now find yourself unable to access it here?

    Which other DMARDS have you tried?

    What is your definition of a med 'working'? Are you going by blood results or pain?

    Sorry for all the questions and, obviously, you don't have to answer but it does just make the picture clearer.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright

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