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@hunib33

Replies to "@dadcue 9 months"

I applaud you for getting off prednisone so quickly. You did much better than me.

It took me 13 years to get off prednisone after PMR was diagnosed. I am still being treated for PMR though. It is a misconception that PMR lasts until you are able to get off prednisone.

Even when people get off prednisone --- I wonder if PMR is finished --- as in over and done with? People often relapse so the best one can say is PMR was in remission for a while. Heck, people relapse while they take prednisone. I certainly had flares on moderately high doses of prednisone. I don't think it had anything to do with tapering too quickly given I took prednisone for 13 years. It was driving me crazy trying to decide how much prednisone I should take every day!

I have another autoimmune condition. Remission is the first step for that condition. The treatment goal is to prevent it from recurring.

I think prevention should be the goal for PMR too. As it stands ... the treatment for PMR is to "manage symptoms with prednisone and wait" until PMR decides to burn itself out.

I tried not to complain about anything. Maybe I should have complained more about how long I had to wait. I would have been fine taking prednisone for 1 to 2 maybe 3 years. That was the original plan anyway.