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@jfannarbor

I have heard about everyone trying to get off prednisone. I have been on and off prednisone for 30 + years and my rheumatologist just raised my P to 15 mg a day. I haven't felt better for two years. I am 78 yo and have normal bone density probably due to the amount of exercise I get. Please let me know what all the problems I am going to have? I was dx with PMR over 30 years ago. For about 15 years I would have yearly bouts of PMR and would take 10 mg of P and over 2 to three months taper to zero. When the PMR came more often I was on 2 mg P for about 10 years and that made it bearable then 5 mg P per day, 10 mg per day and just recently 15, which is the most I have ever been on and I feel it is over kill. Again, after been mainly on and off P what is going to happen to me? I feel great now.

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Replies to "I have heard about everyone trying to get off prednisone. I have been on and off..."

"Please let me know what all the problems I am going to have?"
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You might not have any problems as long as you can still taper off. The higher the dose and the longer you take prednisone it becomes harder and harder to taper off.

I took prednisone for 30+ years too. High doses of 60-100 mg was okay as long I could taper off in a month the same as you. I did this for 20 years for flares but not for flares of PMR.

The flares I had would recur once ... maybe twice per year. I didn't have problems except for cataracts at the age of 40.

When PMR was diagnosed my starting dose was 40 mg. I was still on 30 mg after 5 years and 20 mg after 10 years. After 12 years I still needed 10 mg most of the time. I flared whenever I tapered down to 7 mg and had to go back to 15 mg every time. I don't know how many times I relapsed because I lost count.

The problem I had with tapering off prednisone was adrenal insufficiency. I didn't realize how much of a problem I had until I started a biologic and I could taper down to 3 mg of prednisone. When my cortisol level was checked I was told in no uncertain terms to stop tapering. I needed a referral to see an endocrinologist because of a very low cortisol level.
https://academic.oup.com/mr/article-abstract/32/5/891/6511018?redirectedFrom=fulltext
Adrenal insufficiency was just the last of a long list of prednisone related complications I had. Daily prednisone for 12 years to treat PMR was NOT good for me. I'm doing much better on the biologic that I have now been on for 5 years. I have been off Prednisone for almost 4 years. My quality of life wasn't very good on Prednisone compared to how I currently feel.

My PMR journey hasn't ended even though I am off prednisone