When I was first diagnosed, my arms were definitely weaker than my legs. I did have pain going up and down the stairs in my legs but it was nothing compared to the pain and weakness in my arms. My arms are better now but like you, I feel that the pain in my legs, and for me my knees, has gotten worse. Not real sure why this is. I can still go up and down the stairs etc..but I have constant pain in my legs and knees.

Okapi, i really have to work on my Physical Therapy on my legs nearly daily. That hip girdle all round the hips and thighs and butt area gets to weak. Have you done any PT? I did not find it took many visits to figure out a plan i can do at home. Now when i feel that ache i get back to my exercises and in a few days i feel much better. Good luck to you, Shawna

My polymyositis got so bad I couldnt walk at all, and I had to learn how to do it all over again. I'm also on Imuran. I have found Physiotherapy o be a huge part in my recovery. I was made to do lots of leg excercises everyday. I now make sure I keep myself walking around as long as I can to keep the muscles moving.

I am not in PT right now, but I have been in the past. It seems I always have to quit before I get anywhere. For some reason my doctor hasn't sent me to it yet. I don't see him again til May...

Right now I truly feel as though I can barely walk... it's scary! I know Imuran is supposed to take a while to really kick in, and since I'm not on any prednisone at all maybe that's why it's taking SOOO long.

I constantly toy with the idea of going back to pred but I just can't justify it...

Can you call the doc and ask for an order for PT so you can get assessed and stop spiraling downward as you wait for the Imuran to kick in?? Seems really reasonable to me. Tell them where you might want to go for it. I called around to the Neurologists in town and asked where they sent their Neuro PT patients. Turned out to be the Hospital outpaitent group for me. I went to get a plan so i could do the exercises at home. It really helped me to get back to functioning. I don't think you can wait for the doctor to bring it up, they really don't k now how hard life is for us. If we can walk into their treatment room they think we are fine!!! I am a nurse, this is a really reasonable request, and i think you owe it to yourself to get some PT!!! We can't get better without working the muscles and getting them stronger.

My arms are stronger now too but the legs are not great. I am getting better getting out of a chair because my arms are stronger and I help myself. I have a mild disease we caught early compared to many but I have 23 stairs in my home and I get to stair 11 or so and ma out of breath and barley make it....that is an improvement over 3 stairs and not making it or just not going up stairs for over a month!!

Keep working at it. Sometimes other symptoms seem to get worse in comparison when other parts of your body get stronger. I am by no means saying you are not absolutely correct, I am just saying it may help to keep a journal of your accomplishments and how you have been feeling day to day. Helps refer back at the dr.'s!