← Return to PMR coming back?

ayjaydee (@ayjaydee)

PMR coming back?

Polymyalgia Rheumatica (PMR) | Last Active: Aug 13, 2020 | Replies (9)

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I agree with what was said. I WISH I could get down to 2 mg.! Have been on Prednisone for 2 years
Also have GCA. I get down to 7.5 mg, then I have a flare, EVERY time. Rheumi has tried biologic, but I couldn't tolerate. Have kidney disease so have to be careful what I take. Does anyone else just keep getting PMR every time they taper? I'm so frustrated.

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Replies to "I agree with what was said. I WISH I could get down to 2 mg.! Have..."

@valb68, Don't be discouraged and keep taking it one day at a time. My first time with PMR it took me 3-1/2 years to taper off of prednisone and be relatively pain free. Have you tried tapering down 1/2 mg at a time and go for a week at that dose and if you can tolerate the pain try another 1/2 mg reduction. If you have the 1 mg tablets, they are easy to split.

What biologic was tried?? The only biologic that I'm aware of and the only one that is FDA approved for GCA is Actemra (tocilizumab).

I was diagnosed with PMR in 2008 so 12 years ago. I was also diagnosed with inflammatory arthritis. During the entire time, I rarely was able to get down to 7.5 mg. My memory of my prednisone dose was in the range of 20-30 mg for 5 years until I was able to maintain a range of 10-20 mg for a few more years but I had many flares. Finally I was able to maintain a steady dose of 10 mg. Anything less than 10 mg involved pain but I don't know for sure if it was PMR pain. I suspect adrenal insufficiency was a problem around the 7.5 mg dose. It is said that pain associated with adrenal insufficiency mimics PMR pain. I'm aware of countless people who encounter problems at the 7 mg level.

In early 2019, Actemra (tocilizumab) was tried and I breezed through the 7.5 mg dose. I tapered quickly to 3 mg and was told to hold at that level for a few months. Adrenal insufficiency was confirmed but it was not as bad as was feared. I eventually tapered down to 0mg for five weeks until I had flare of uveitis which is associated with inflammatory arthritis. A different biologic (Humira) was tried but PMR symptoms returned. Actemra (tocilizumab) was restarted and I have been off prednisone for the past 3 months.