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Hi Folks

Hope you are all well. I have had a very bad week, severe headaches, had to visit the out of hours service, biopsy, but better now, maintaining 30mg Pred, rheumy in a weeks time. I feel in control now so thing are on the up. Thanks for all the help and advice this forum is really helpful.

John

0 likes, 8 replies

8 Replies

  • Posted

    Hi John

    I'm so sorry to hear that you have continued to suffer badly with those headaches - I was concerned that if GCA was suspected then 30mgs would not be enough to control the inflammation as 40-60mgs is usually required to get the symptoms under control.

    I'm sure it's not much fun going through a temporal artery biopsy but I'm glad to hear that you are beginning to feel better now.

    It's still a week away to your rheumy appointment so if in the meantime you experience any eye problems whatsoever or worsening head pain, don't wait for the appointment but go straight to A&E.

    Do hope you continue to improve and come back and let us know how you get on as we'll all be keeping our fingers crossed and thinking about you. :ok:

    MrsO

  • Posted

    John What did the biopsy show?

    You say a wek of severe headaches and 30 mgs. I \"only\" have PMR so no first hand experience but that does not sound a very high dose. I have a couple of time on here told the story of a close friend who, in his fifties, was finally diagnosed with GCA or temporal arteritis. He was very ill and in hospital for some time before diagnosis but the Pred ( 60 mgs ) worked like a miracle. Pain free within a day and home to start the long, long road of reduction. It was a VERY long road indeed, eleven years; I think this was at least partly due to the apparent lack of knowledge, then, about the necessity for slow tapering and it was his wife who pointed out that, as the dose reduced, the percentage of the reduction increased unless the units were changed ( O level maths anyone? ).

    Anyway,getting on for twenty years and a multiple heart by-pass later, he is fine and no recurrence.

    Hope you soon feel better. Keep in touch.

  • Posted

    BettyE is quite right - the normal and recommended base starting dose of pred for GCA is 40mg. That 10mg may not sound a lot but is important and often they start at 60mg. It's the high initial dose that is crucial to reduce the inflammation in the arteries to the eyes and avoid blindness, then they reduce quite quickly. In PMR you can afford to use a much lower dose and wait for the inflammation to calm down as there is nothing at risk - it just takes longer for you to achieve better pain control.

    Eileen

  • Posted

    Hi folks, hope you are all well, and coping. GCA results not expected for a week or so, but it seems quite obvious. Meanwhile only mild discomfort around my eye and generally feeling well. Best wishes and good fortune to all.

    John

  • Posted

    Brilliant!

    Eileen

  • Posted

    Hi there John and everyone glad to hear that things are going all right with you.

    I hope everyone else is keeping as well as can be

  • Posted

    Thats good news John Hope things continue to go well

    Mrs G

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