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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roxannak 09/29/2013

Nothing like experience to let you know what something is! I started on 3 mg of prednisone sept 1 and was looking forward to being off in December but no such luck. I had the heavy legs and tired feelings the first few weeks of each decrease but the last one kept going. My ck was 312 on sept 11 and a week later was 309 so just over the high normal but I was getting stiff in my thighs and abdominal muscles. (Ck was down below 40 since last october) Went in to the rheumy and she started me on 20mg of prednisone for two weeks then decrease by 2.5mg every two weeks if I'm getting better. That was last Thursday and today my cheek muscles are getting sore along with my neck
Also getting scheduled for another round of ivig. So my friends I guess I'm not returning to work anytime soon and afternoon naps are back on the books. At least the nice fall days are conducive to naps.
Feeling sorry for myself and worried that I may get worse before I get better!
It's amazing how quick you can forget the pain and discomfort when it goes away for awhile. Oh well time to take it easy and care for myself!

Thanks for listening and I will keep you posted. My voice gets tired at the end of the day and my chest feels tight so I hope that gets better quick. My hubby has a hunting trip planned and he so deserves to go

Keep us in your prayers

Roxanna :)

deleted_user 09/30/2013

Oh Yes, once you have a bad flare, it is easier to notice the symptoms. What started bothering you first?? try to take some notes, so next time you might be able to catch it earlier. Often times my chew fatigue comes back first or some choking increases from once a month to once a day to multiple times a day and i kn ow i am in for a ride.

Sending you patience with yourself, strength and healing light.
My best, Shawna

autumm 09/30/2013

Hi Roxannak I am sorry to read your post. The most important thing is you got help quickly so the doctors are on top of it. Rest and get better. Let us know how you are doing. Best wishes to you. Autumm

trpt1 09/30/2013

Roxanna, this disease is so tricky! I am sorry for the disappointment and flare. I know the feeling. My right arm begins to hurt, then the left arm. I will immediately go up by 1mg of prednisone when I feel it coming on to stop the screaming liver. Flares can be scary feelings in my chest too.

Good luck with the ivig. I will put in some prayers for you.

roxannak 10/02/2013

Thanks so much ladies I sure appreciate the support and prayers!!
So the labs look good now, CK is 79 and liver enzymes are fine but the symptoms are getting worse!! had a few episodes of swallowing trouble and a heavy chest so now going for another echo cardiogram, swallowing assessment and pulmonary function test. Guess I will have a busy couple weeks, something to do during the day ;)
Will keep you posted
Shawna you are so right, i tend to ignore my body so the symptoms will go away and thats not working! Time to listen again and rest rest rest!!
Fall afternoon naps are the best!
roxanna ; )

deleted_user 10/03/2013

Roxannak, you are still new to this so the tests make sense. For me at nearly 3years we ignore most symptoms in a flare and just up the steroids and IVIG... I did get a lung CT last flare, but that was it... My labs are unremarkable but my symptoms tell the story, that and my TIF-gamma auto-antibody... It lends to difficult to treat. When i had swallow tests they showed nothing, and even they put the camera down and saw nothing, so i won't have those tests again, i can't swallow and that is that...

Now i am eating well and all is good. Hope some rest and more meds gets you back on track...
S

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