Hello! I hope this is the right place to post. A good friend of mine was diagnosed with polymyositis last month, and I am hoping someone can tell me what this means in terms of prognosis. What is my friend's life going to be like in the longer term and what kind of potential complications can he expect?
Loading...
My mother was diagnosed in her 60's (although she had many wrong diagnoses for years before this) with Polymyositis and I was diagnosed at 40 (13 years ago). I have controlled the disease with steroids for this time, but recently a Rheumatologist started me on methatrexate which made the disease many times worse. Then he tried Imuran which was no help at all. I am now just having Prednisolone when I feel I need it and avoid the other drugs. I have good days and bad days - do what I can on the good days and rest on the bad ones. It is a frustrating disease. I hope your friend has luck with medication but please ensure him that it doesn't mean he can't have a good life, just a little slower one maybe. Good luck.
Loading...
I am in my 70" diagnosed 2 1/2 yeas ago. Started prednisone, no luck wth methotrexate or imuran, Now on cellcept. It is working OK, no muscle aches, just a little weakness. My main concern is that I am so tired all the time. No energy at all. I try to get the basics done in the house then I want to sit. I do get up and go to the pool and walk in the water 3 days a week. I do not get short of breath in the pool but if I walk any distance any other time I do.
Loading...
Hi Merle
The "no energy" thing is part and parcel of the disease unfortunately. I am OK most mornings but by 2pm am really tired. Have nights when I have to force myself to cook dinner for the family. Also get out of breath when walking (I avoid steps or hills). Rheumatologist wants me to try Intragram infusions, but I am reluctant at this time (and none of my GP's have ever heard of it).
The "no energy" thing is part and parcel of the disease unfortunately. I am OK most mornings but by 2pm am really tired. Have nights when I have to force myself to cook dinner for the family. Also get out of breath when walking (I avoid steps or hills). Rheumatologist wants me to try Intragram infusions, but I am reluctant at this time (and none of my GP's have ever heard of it).
Loading...