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Feelings when tapering: My journey

Polymyalgia Rheumatica (PMR) | Last Active: Nov 13 10:21am | Replies (57)
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@dadcue

What was the time frame for all of this tapering. I took prednisone for 12 years for PMR. When I was finally able to discontinue prednisone, I had to stay on 3 mg for 6 months because my cortisol level was low. An endocrinologist said it "might be safe" to discontinue prednisone after my cortisol level improved.

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Replies to "What was the time frame for all of this tapering. I took prednisone for 12 years..."
joan7 | @joan7 | Jul 9 10:10pm

I started the Prednisone at 60 mg in August, 2023 and still weaning to date. I have an appointment July 30th with my regular Rheumatologist. This Friday I have an appointment with my Rheumatologist at UPenn., Perelman Center.

This was my tapering process:

August 2023 - 60 mg
September - 40 mg
October - 30 mg
November - 25 mg
December - 20 mg
January - 15 mg
February - 10 mg
March - 7.5 mg
April - 5 mg
May - 4 mg
June - 3 mg
July - 3 mg every other day with 2 mg in between
August - Rheumatologist may take me down to 2 mg

So if my cortisol level returns to normal, than I may be able to stay off all medications for PMR?

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ncgal | @ncgal | Jul 10 6:50am

Just wondering how long it took your cortisol level to improve. Like you, I just finished Prednisone a few weeks ago after 4 years. I don't have any symptoms of the PMR, no pain, but I am totally exhausted all the time. I'm wondering if it is Prednisone withdrawal. My rheumy said to take a low dose of Prednisone which might help with the exhaustion. I really don't want to do that. So I was wondering if you were given a time limit for the cortisol level to improve. It does get a little better each day, but still not back to normal.

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