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Pauletta (@rachelp)

PMR or Steroid Myopathy

Polymyalgia Rheumatica (PMR) | Last Active: Apr 22, 2019 | Replies (25)

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Hello @rachelp, welcome to Connect. I have had 2 occurrences of PMR. The first lasted 3 years at which time I was able to taper off of prednisone. Then it went into remission for 6 years and the 2nd occurrence lasted a year and half and I was able to taper off prednisone this past February. Methotrexate was never offered as a treatment for me by my rheumatologist but I certainly would have tried it the first time around as I really had a problem tapering off. Sometimes just a 1 mg drop and the pain would come back in my shoulders, arms, legs and hands with a vengence. I have no medical training or background but my guess is that pain is pain and I think it would be difficult to discriminate between the two. I did find a short article that talks about it being misunderstood (I think).

Acute steroid myopathy: a highly overlooked entity

I did find one member who has a profile mentioning he was diagnosed with steroid induced myopathy. @davidgold are you able to share any suggestions or information for @rachelp?


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Replies to "Hello @rachelp, welcome to Connect. I have had 2 occurrences of PMR. The first lasted 3..."

I saw a physical therapist today. After a strength assessment, I was told that I do not have muscle weakness. The assessment did not surprise me. I have repeatedly told my doctors that my muscles hurt when used and often hurt when not in use.

Have you read any of the current research which has documented that the capsular lining of muscles and bone is inflamed in PMR patients? There is also research showing that bursae may be inflamed. My joints have some osteoarthritic pain, but it is insignificant. I have pain in some muscles that is definitely (in my opinion) specific to a muscle bundle. The bundle which is the most painful is the one from the groin, through the thigh, and attached at the knee. The pain is bilateral, and it does not respond to physical therapy.

The physical therapist suggested that I locate a rheumatologist who specializes in the treatment of PMR. I think that is probably what I should do since I have been dealing with this since October of 2017, and it is not one bit better. Do you have any suggestions of a physician how to begin my search? I tried searching the web this afternoon, but my searches yielded only general information on PMR, not the names of rheumatologists specializing in the treatment of PMR.

I forgot to thank you for responding to my query. Your response was most helpful.