Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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Muscles & Bones
/ Polymyositis & Dermatomyositis Support Group

New Member ;)

lexxxi92
lexxxi92

Hi everyone! Had a recent visit with my rheumatologist and she suggested I join a myositis support group. Diagnosed with dermatomyositis a few months ago. Symptoms first appeard in 2015. Currently on Prednisone, CellCept, and Wellbutrin. Thankfully the disease hasn't spread to my muscules and hoping to keep it that way. I do however suffer from horrible rashes on my hands, face, elbows and knees, along with the other wonderful side effects from the CellCept and Prednisone. Hoping this group will help with the depression iv been dealing with since being diagnosed and accepting the disease.

Samdabb
Samdabb
Hello , my mother was diagnosed wirh PM 7 years ago. She was always seeing a rheumatologist . I want to take her to an another doctor to take another opinion about her treatments should We see a neurologist or rheumatologist ?!
maizeemae
maizeemae
Know exactly how you feel. The rash on my arm is so bad I want to scratch of my skin. Diagnosed with multiple autoimmune disease with dermatomyositis being one of them. My Sjogrens, Lupus, RA, were diagnosed in 2014. My doctor suspected along time before. The Raynaulds was diagnosed way back. I am taking the many meds. Along with anti maylaria meds, Rutuximab infusions (Chemo) and am just miserable. I have tried all scrubs, cortisone creams, Benadryl, and sounds like I have one option left and that is a very expensive blood transfusion. So Depressed. I hope you have better luck than what I am having.
stuart-j1
stuart-j1
Hang in there, this is a very tough disease as I have recently found out along with everybody else on this page.

I came down with the red rash on my chest back in September and did not think much of it because it did not hurt or itch, was thinking I was just having an illergic reaction to something. Then two weeks ago I woke up in the middle of the night and could barley move with just an intense amount of pain upper legs, back, shoulders and upper arms. It loosened up as the day went and it seemed to get a little better but by the next week I went to see my internal medicine DR. and told her that something was just not right in my muscles, she ran several blood test and found that my ck level was 2762 so off to the ruematologist where they confirmed that I have Dermatomyositis. I am very active and used to work out 5 days a week and that life is now gone for the imeadiate future. I am just trying to get my muscles going again. The one thing that I was glad for, is that I was not impacted by the rash as bad as most people on this board we’re. I could not imagine having to deal with that along with the pain and muscle degeneration. They put me on 80 mg of prednisone and thing got a lot better so they dropped it to 60mg and added 15mg methotrexate. Hopping see improvement soon. I wish everyone the best who have the illness. It is ugly.