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
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My Story

rave713
rave713
I have had many problems for about two years. It started out as my joints aching and i wasn't able to get around very well. The doctors thought it was arthritis. I have also always had skin problems and the reynaulds. I wasn't diagnosed with Dermatomyositis til Februrary 2010. It has been a hellacious year. My daughter was stillborn on December 19 2009. It was the hardest day of my life. It was followed by even more pain both physical and mental. I became extremely weak. I was dropping about 10 pounds per weak. I was unable to sleep in my own bed do to the fact making it there seemed impossible. I resorted to the couch. When I got my testing done my CK level was over 5,000. They have put me on prednisone and methotrexate. My CK has dropped down to 600. However, now im having heart problems. They say it just palpitations and there is nothing they can do its just because of the medicines. Has anyone else experienced these problems? I fear that if ever does become life-threatning i wouldn't know because it has just become a part of every day life.
deleted_user
deleted_user
Im 21 and I was diagnosed at 19 with DMS. I started taking prednisone and methotrexate as well. I feel the heart palpitations which freak me out. Some times its so bad that I put my hand to my chest and think OMG im about to die. But it goes away after a few seconds, its just really freaky. Ive heard that its the prednisone, but dont quote me on that lol. My aunt who has rheumatoid artheritis takes most of the same meds I do, prednsione, methetrexate etc. And shes been on them for about 25 or so years. Shes probably 46 I think, and sometimes she wears a heart monitor. Im scared for her and Im scared for myself, because I keep thinking "that's where I will be in 20 years." It honestly scares me, but I try not to think about it too often. After taking the meds, my doctor was able to ween me off prednisone for about a year before I had a flair up. He told me that methotrexate was pretty safe (im not sure if I believe that), but that its really important to work towards getting off prednisone if possible. I am so sorry about your daughter. I would love to have children in the future, but my doctor said the meds wouldnt be safe for the baby. In the meantime I work at a daycare lol, but I truly hope to be off the meds within the next few years so that I could oneday have my own child.
horseluvnhoosier
horseluvnhoosier
Dear Rave,
I am so sorry you are having such a difficult time. Could I ask you a couple of questions without appearing too rude?
Do you know why your daughter was stillborn? Do they attribute it to the DM?
Also, were you diagnosed by a muscle biopsy?
How old are you?
I am curious because of lingering suspicions that my daughter is also suffering from some sort of auto immune disorder.
I will pray for you and hope that things will start to get brighter!
deleted_user
deleted_user
You guys are sooooo lucky to found each other! I was diagnosed with PM at 16 way back in 1988. No internet, no local PM support 'cuz NO ONE knew what it was. I've was off meds for like 20 years (just turned 40).

Palpitations are usually prednisone related. I get them too. It's a little freaky.
rave713
rave713
They said the reason she passed was because of Factor V Leiden. The placenta was visually a mess. Factor V is a disorder which causes blood clotting they believe the clotting was in the placenta which was slowly breaking it apart. I guess im lucky they generally cant find a reason as to why it happens but even though i know scientific medical reason still arent good enough i still ask why?... they didn't attribute it at all to the DM but i know the DM was affecting me so idk how much it was affecting her...and no i have not had a muscle biopsy they just looked me over and i guess because of my ck decided it must be DM... Im only 20.