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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  • Hey guys! I don’t have a diagnosis yet, but from the research I’ve done, it seems possible that I have PM. I’ve read through a few posts and have some questions/thoughts for you guys. 1) The reason I think I have PM is because my blood tests from a few weeks ago show that my ANA screener was positive and my JO-1 levels were 281 au/ml. However, in April of this year, my ANA screener was...
  • carlos12345

    New to Polymyositis

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    started feeling week legs about 2 months ago. Had MRI and edema in the hips and quads. Went to ER and ck was around 10k spend 10 days on steroids and was discharged with ck at 220060 ml daily for 2 weeks and Syrians extended to weakness in shoulders and starting to have arms and hands shake every so oftenwent to rheumatologist and checked my ck and had elevated to 4200 so they started me in 500mg...
  • Aliraqi

    Treatment of refractory Polymyositis

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    Recent studyand researches about the role of HSCT in drug-resistant Polymyositis and Dermatomyositis????
  • Hello to all.  I have Dermatomyocitis without the muscle involvement and agree with many posts that this disease is just really difficult to deal with.  It just rears its ugly head without any reason, it seems.   My God-send has been CellCept (Mycophenylate).  Without this biologic, my body would be one itchy, itchy, painful rash.  The scalp seems to be extremely susceptible and a few years...
  • pm2004

    Dermatomyositis

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    My husband was diagnosed in April.  He has lost about 20 lbs. of muscle.  His rash is clearing, but the area around his eyes are swollen to the point that he can barely see.  The rheumatologist doesn't think this is part of it, but I believe it is.  Does anyone have this problem? 
  • HMCsher

    HMCsher

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    hello. I'm new to group. I've. Even diagnosed for almost 4 years now. I've been on such a roller coaster ride with this whole thing. I've joined today but been following for a few months. I'm. very grateful for you all. This disease is so strange.  And because it is so rare, no one has it so there is no one to talk to. So seeing that someone else has the same struggles and I'm not crazy or...
  • deleted_user

    Muscle twitches/spasms

    I get muscle twitches/spasms 24/7 and they occur randomly in almost every muscle. Leg muscles, back, side and stomach muscles, arms, bucks, delts. Sometimes they are just dull and annoying, but sometimes they are bigger and create a bigger jolt. Like when I get a neck or chest muscle one.The ones in my legs and arms might be three or four twitched in the same muscle, and I call my husband over to...
  • lexxxi92

    New Member ;)

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    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,...
  • seline

    Swelling on fingers

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    hey guys I was diagnosed with dermatomyositis a year ago. I was wondering how you guys deal with swelling in the fingers when the pain gets unbearable? I'm under treatment but I'm sure as some of you know sometimes symptoms come and go as does the pain.
  • LuckyBabe

    Silicone Breast Implants - dermatomyositis

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    Twenty five years ago I had silicone breast implants. Oct 17,2015 I discovered a limp in breast - perfectly round - a bit like a drop of water the size of a quarter. The next day after a doctor exam and a sonogram at the radiologist it was discovered my implants were leaking. I was immediately referred to a plastic surgeon for removal of the implants as a medical necessity. I underwent...
  • deleted_user

    exercise with high ck levels

    Hi everyone I was just wondering my doc told me not to exercise because my ck level is more then 200 which its 800 right now it was 360 a month ago but went up when he tried to taper me off prednisone. I was wondering if it would be safe to get on a treadmill or a stationary bike to get some things going with my muscles. Would like to know if anybody on this forum doing any exercise to promote...
  • Indigolove67

    Newbie here

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    Hello everyone, I'm new here, just got diagnosed recently, i also have Lupus. Dropping by to say hello.
  • deleted_user

    Weak Quads + Walking

    Of course, as we all know with polymyositis (and perhaps DM. I don't know), the Quad muscles are generally affected (which affects getting up and walking, etc). Well, I'm no exception to that rule. When I was first in the hospital, my walking was actually fine. Granted, I HAD a few falls (which is what led me to leave school and come home to the hospital)...but I walked normally with proper knee...
  • nanny1611

    Who is still here?

    Just was wondering what members are stll here at DS.  Let me know who is still around the Myositis forum.
  • Testkit

    Serrapatese and Autoimmune

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    Please read my post. Just search for Serrapatese title. It works!!!!  120000 Dr. Best. One a day , but just started on two a day. My doctor is shocked.