polymyositis ??????? - Myositis Message Board

toribird97 · 05-03-2006, 02:31 PM

My mom is 55 yrs old. She was diagnosed with polymyositis 3 yrs ago.
She was on Methotrexate for 2 1/2 yrs. The whole time she took this medication it was no help her enzyme levels have reached as high as 1850!
She is now taking Prednazone this seemed to work at first however her levels are back up again. She can barely get up steps- I am starting to worry - I feel that the doctors just don't know how to treat this disease. She has been through physical therapy that has not helped. She just had an EMG (the needle procedure to see if there is nerve damage -not sure if it called that!) Anyway there is no nerve damage-but inflamation throughout her whole body-what now? They say her body is attacking her own muscles. Has anyone else been through this? Is there light at the end of this tunnel? Do you ever get well?

eskaz · 05-10-2006, 07:58 AM

I have Polymyositis. My CPK , which is muscle enzymes,was 1900. I was put on Prednisone and later Methotrexate. I was on this for almost a year and after being taken off Prednisone , within two weeks the disease came back worse than ever. They put me on Methotrexate injectable and at higher doses and back on 10 mgs of Prednisone. This did not help so they raised my Prednisone level and after three months I started to do better . I was so weak that I could hardly walk and very unstable, not to mention the muscle pain .
Now they have taken me off Methotrexate and are going to try Cellcept which is a drug taken by people who have have transplants and so there body does not reject the new organ.
I wish I had better news to tell you , I am told there is no cure , but always a hope that it goes in remission. I am willing to get down on as little a dose of Prednisone as possible to keep me from the disease being out of control , but my Doctor wants me off Prednisone and is hoping Cellcept will help to so this.

eskaz · 05-10-2006, 08:01 AM

Quote:

Originally Posted by eskaz

I have Polymyositis. My CPK , which is muscle enzymes,was 1900. I was put on Prednisone and later Methotrexate. I was on this for almost a year and after being taken off Prednisone , within two weeks the disease came back worse than ever. They put me on Methotrexate injectable and at higher doses and back on 10 mgs of Prednisone. This did not help so they raised my Prednisone level and after three months I started to do better . I was so weak that I could hardly walk and very unstable, not to mention the muscle pain .
Now they have taken me off Methotrexate and are going to try Cellcept which is a drug taken by people who have have transplants and so there body does not reject the new organ.
I wish I had better news to tell you , I am told there is no cure , but always a hope that it goes in remission. I am willing to get down on as little a dose of Prednisone as possible to keep me from the disease being out of control , but my Doctor wants me off Prednisone and is hoping Cellcept will help to so this.

toribird97 · 05-10-2006, 02:40 PM

Thank you so much for your response. I told my mother about the Cellcept, hopefully at her next Dr. appointment we will discuss this. Anything new we would be greatful to hear about. I wish you lots of luck & I really hope this new drug works for you. Thank you.