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Any advice please, GCA problems.

Posted , 3 users are following.

catherine34621
catherine34621

Hi everyone, to recap, into 6th year with GCA (no PMR), took quite a time to diagnose, (sent to another Hospital, Rheum. did her best, finally got the diagnosis. Been on Tocilizumab for 12months, (tried Leflunamide which helped, but couldn't get off Pred.) Finished Pred. about a month ago, straight away started feeling stiffness in my fingers, aches all over, but no symptoms of GCA. I waited until I had a telephone consult. with my Rheum. (who is great), she said it was probably ost/arthritis and the Pred. had been treating it. I take hydrocortisone as my adrenals are slowly waking up, the dose was increased to supplement the Pred when I came off it. Now I have a choice, go back on 2.5mgs. of Pred. or wait until the tocilizumab finishes and wait and see. I have to think about it, I need help, please, Thank you.

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2 Replies

  • EileenH
    EileenH catherine34621

    Posted

    You will get a response if you come over to this PMRGCAuk forum:

    https://healthunlocked.com/pmrgcauk

    There are few people here because we get no notifications from the site due to a policy change and it is too cumbersome to use.

    Tocilizumab only gets about 50% of patients totally off pred, the rest require an ongoing low dose to manage all the symptoms and PMR-type symptoms can be part of GCA. However, quite a few patients find they get these types of aches once they are off pred as part of poor adrenal function and it can take up to a year to improve. Prof Dasgupta at Southend told us last year that he often keeps patients on 2-3mg pred long term as it reduces the likelihood of relapses.

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