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Pauletta (@rachelp)

PMR or Steroid Myopathy

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

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@rachelp

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.

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Replies to "I saw a physical therapist today. After a strength assessment, I was told that I do..."

Hi Pauletta @rachelp, I'm able find a list of doctors in the Rheumatology Department for Mayo Clinic Rochester and Arizona just by using that phrase for the Google search. Dr. Thomas Osborn at the Rochester Mayo Clinic was the rheumatologist who diagnosed my PMR and was really good at helping me with my treatment plan. The thing I like about a Mayo Clinic campus is the different areas work together to help patients with difficult to diagnose health concerns. I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

When I'm trying to find research on medical papers and articles I will use Google Scholar (https://scholar.google.com/) which allows you to sort the search results by year showing you the latest information on a search. I did a search on the phrase capsular lining +polymyalgia rheumatica and here is the results with 2018 selected to show the newest first.

https://scholar.google.com/scholar?hl=en&as_sdt=1%2C24&as_ylo=2018&as_vis=1&q=capsular+lining+%2Bpolymyalgia+rheumatica&btnG=

I believe inflammation is a large symptom of PMR. My PMR was mostly in the hands, arms, shoulders, legs and joints. The first time I was diagnosed I waited too long to see the doctor and had to use a walker in order to walk. Pain was really bad but after meeting the rheumatogist and being examined, he diagnosed me right away with PMR and prescribed 20 mg prednisone. That was a morning appointment with him and I had another appointment with him the same day in the afternoon. I picked up the prescription and had lunch and by my afternoon appointment I no longer needed the walker. As much as I hated taking prednisone it was the magic pill for me. Dr. Osborn took the time with me to educate me about the disease and the treatment goal of tapering off of the prednisone gradually until the PMR goes into remission however long it takes. The first occurrence for me took 3 years. The second occurrence after 6 years of remission took a year and a half to taper off of prednisone.

Did your doctor offer any treatments or other suggestions for you?

John