Re: renal patient with a 8000 cpk,, i need answers
Sorry to hear you are not getting better. This can definitely be a slow process. I was diagnosed with dermatomyositis last August and could not climb stairs without a rail until at least December.
I think that each person is so different with this disease. Some people take a lot longer to recover than I have; others more quickly.
Advice: If you are not satisfied with your progress, you should discuss it with your doctor. There are not a lot of treatment regimens from what I have seen, mainly the Prednisone, Methotrexate/Imuran or equivalent, and skin medication (if you skin is affected) and some people have to have IVIG injections.
My doctor recently told me that while I am so much better I will probably never be what I was before I got this. At this point, that is okay. I can't do as much for as long as I did before, but I can climb stairs, get out of a chair, etc. We have to look at all the positives, how much better we are, how fortunate we are, etc. when we have an illness like this and pray that we will continue on a path to wellness while focusing on the positive.
Hope you continue to get better and QUICKLY!