Why such different reactions?

GCA was diagnosed in May of 2016. I was started on a regime of 60mgs.of prednisone, reduced by 10 mgs to 30 mgs in August of 2016. I thought I understood that the eye concerns were addressed and I wouldn't have the TA symptoms again. reading these posts show me that flares are a common occurrence . I'm back on 60mgs. And greatly discouraged with the blurred eyesight and the ballooning body from the Pred. Will I ever beat GCA or will it continue forever??

2 Replies

  • Hi Mgeorge,

    From my experience of GCA I would say 30mg reduction within 3 months is a bit quick! Would suggest that during that reduction your inflammation got out of control again, after the initial 60mg had it covered. Trouble is, because you came down so quickly, you can't really tell at what level it all went pear-shaped. So, you have to start again, with either reductions at 5mg a time, or staying at each new level for a least a month, or both.. You need to make sure with blood tests and symptoms that everything is okay, before you reduce again.

    Sorry but there is no quick way to get off Pred or get rid of GCA. It takes its own time to go into remission, and usually it does. There are lots of people who get through this, but nobody can say to you it lasts x number of years - it seems to vary - but anywhen between 3-5 seems to be a good average! Plus what you have to remember whilst you are reducing the Pred, you still need to ensure you take enough to control the inflammation at all times - that's the balancing act we all have to master!

    You won't beat GCA, but you will be free of it - somewhen.

    Good luck with your new reductions.

  • No - pred isn't a cure. There is no cure, all the pred does is manage the inflammation that causes the problems until the autoimmune part that causes it burns out and goes into remission. As long as the autoimmune part is active - you will need enough pred to manage the symptoms it causes.

    For most people it does go away - sometimes in the 2 years that doctors are so keen to tell us it lasts, but more like 5 years is more realistic, sometimes a bit more. There are people on this forum who have come out the other side of the tunnel: Celtic and Sambucca spring to mind. DL is nearly there, and I know others on other forums. Most people tend not to hang around to be reminded of an unpleasant episode of their life.

    But DL has touched on the A and O: you CANNOT rush off pred. In the first 18 months flares are very common and the most common cause of flares is trying to reduce too fast or too far. I'd say you had done both. There is evidence of inflammation still being present after 6 months on high dose pred - that is above 20mg - you need enough pred for long enough.

    A lot of people found the weight gain was avoided/kept within reasonable limits by drastically reducing carbohydrates. It is always worth a try - pred changes the way we process pcarbs and results in the deposition of fat in the usual places. Less carb - less fat.

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