I have both PM/DM. Diagnosed in Dec 2006. Remission for three years now and feeling great. Prednisone, Imuran and a strong will got me through all the rough times. I had an elevated CPK three months ago and went back on a small dose of both drugs again but never got the weakness as before. Hope to be taken off them today when I go back to the Dr.

http://zarashomepage.com this is a link to my home page that I wrote as a journal with my journey

I am strictly PM. I agree that from what I have read DM is not as much about the muscles. I'm just 2 mths in on the meds. I started stretching/yoga as soon as I started to feel some improvement and my first blood follow-up came back at a good level. I can't wait till I get the go ahead for some PT or strength training exercises.
My big question is will the muscles really get stronger and bigger? My husband is into weight training, so I know the normal progression. From what my Rheumy first told us at my diagnosis he is under the impression I can be "normal", meaning the way I was before the PM. I don't think that will ever be the case, only from reading other peoples experiences. I hope this topic is picked up, cause I have more questions then answers!!!

NEVER say never. I could not even get out of a chair or walk without falling or lift anything or reach out to pick up a phone, today I am as good as I ever was and lifting heavy furniture ect. I dance, play golf and anything else I want to do. Did you read my homepage? it gives you an idea of how things were and it would have been so easy to give up. I never listen to anyone with negative thoughts and just because they can't it does not mean I can't. this is how you have to approach this rotton disease. Don't overdo the muscles, let them work themselves. I never was one for exercise so really never did. I can also now Zumba dance for an hour also. just remember one thing, negative thoughts give negative results. Don't give up. We are here for you.

Myositis; LOL, but I don't believe I said NEVER once. I am not giving up. NEVER have NEVER will. I'm just wondering if I am going to be able to get back up from a crouch wearing my 4 inch spikes some day in the future. I am encouraged by your positive progress, and wish you well. I look forward to reading your homepage. Thanks for the boost!!
Mare

LOL on the 4" spikes! I wore flat shoes, mostly tennis shoes for the first 4 years then ventured to trying a small heel, it worked great but not the thin heel, I wear the wedge heel now. Mainly for balance. What meds are you on?

Oohhhhhhh how I miss heels! :( I have hope that one day I will be able to once again wear them.

After the second relapse we took a 3 week tour to Alaska,now we are back It was a long way from home.
We are living in Israel,

Hi gang, I was away from here for quite a while and started this group, but left with no access to it now. Hope to catch up and see how you all are?
Rhonda

Hello, I am also strictly PM, going on 2 years now. I've been able to go off of the prednisone and all diabetic meds. I just wonder when something is going to sneak up a bite me in the butt. remember the days when I couldn't get out of a sitting position and the days when walking wasn't an option, I crawled from my seat into the bedroom and needed help to get into bed. Most recently the only main hurdle I face is climbing stairs. Rheumatologist states that I've lost 30% of the muscle mass in my hips and legs.