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PMR or Steroid Myopathy

Polymyalgia Rheumatica (PMR) | Last Active: Feb 2, 2023 | Replies (30)

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@obetv

A quick summary of my experience with PMR : I was diagnosed 1and 1/2 years ago and was put on 20 mg dose which was tapered to 8 mg over the course of 8 months when pain came back and I returned to 10 mg. I have since tapered slowly down to presently at 5mg but have noticed considerable more pain returning especially in the neck and shoulders. I am quite active and I do drink alcohol regularly. I get fevers on occasion and am concerned that this barrier will not enable me to reduce further.
I see my rheumatologist in a month and I want to ask about how long I can expect to be on prednisone and if I should consider methotrexate. Any advice about possible avenues to pursue ?

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Replies to "A quick summary of my experience with PMR : I was diagnosed 1and 1/2 years ago..."

Hello @obetv, welcome to Connect. I also have PMR which is currently in remission. I can tell you the each of us with PMR is different in the way the disease affects us. My first occurrence of PMR was in 2007 and it took me 3 years to taper off of prednisone. The last 6 months of the first occurrence was going up and in the dosage from 1 mg to 1/2 mg and back up to 1 mg until I was finally able to stop taking prednisone and not have a lot of pain. The PMR went into remission for 6 years and came back in 2016 and lasted around 1-1/2 years. The second occurrence I tapered much slower using smaller decreases in dosage until I was able to stop taking prednisone.

No one can really tell you how long you can expect to be on prednisone since we are all a little different on how the disease affects us. I would really suggest talking to your rheumatologist to see if he can give you some different tapering options to see if you can come up with something that works for you. It might be worth discussing methotrexate with your rheumatologist since it may let you use lower doses of prednisone.

Methotrexate in polymyalgia rheumatica: preliminary results of an open, randomized study.
-- https://www.ncbi.nlm.nih.gov/pubmed/8730115

@obetv has your doctor suggested any specific tapering schedule for prednisone?

John