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Pauletta (@rachelp)

PMR or Steroid Myopathy

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

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@johnbishop

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

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Replies to "Hi Pauletta @rachelp, I'm able find a list of doctors in the Rheumatology Department for Mayo..."

Actually, The Mayo Clinic is where I am considering seeking treatment. I have reviewed their locations, and at this time of year, their Florida Clinic has my eye.

While I like the doctors who have been treating me, it is clear that their expectation was that I would go into total remission within about 12 months. At eight months the pain began coming back, but it was always attributed by them to something other than PMR. Twelve months later, and the pain is still alive and well. Once one has suffered PMR pain, one recognizes it when it raises its ugly head again.

Thank you for the tip about Google Scholar. I will certainly be using it.

Prednisone is most definitely the magic pill for me. Within 12 hours of beginning the dosage, I was totally pain free. It was a miracle–absolutely magical. But the side effects of prednisone are horrific. My skin thinned around my eyes to the point that I have had skin tears where the nosepieces of my eyeglasses rest on my nose. I had to go to the ER with my last tear so they could glue the skin in place. I want off the Prednisone which is why I am researching Methotrexate and Tocilizumab.

My doctors have prescribed physical therapy (PT) in addition to Prednisone. My muscles were weak at the time of diagnosis because it took three months for the diagnosis to be made. After the pain was controlled, about a month of PT increased my leg strength. I have regained my leg strength, but my muscles are no better. As I told you, the PT I saw this week does not recommend PT, and she is writing a report to my rheumatologist explaining why. So . . . in a few weeks when I see the rheumatologist, I am going to ask why Methotrexate or Tocilizumab cannot be used concurrently with the Prednisone since I am still having muscle pain at low dosages of Prednisone. She has said that I was coming off Prednisone whether or not I was in pain.

It will take me a month or so to get an appointment with The Mayo Clinic, so I will continue to work with these doctors until I can get the appointment.

It really bothers me that the body language of these doctors clearly transmits disbelief in what I am telling them. It is not only their body language, it bothers me that they attribute the symptoms to osteoarthritis or steroid myopathy rather than to PMR. From their behaviors, one would think that I WANT to take Prednisone like a junkie wants his/her heroin. What I WANT to to remain mobile–neck, arms, hips, and legs.

Thank you for listening. Before I head to bed, I am checking out the link you provided.