renal patient with a 8000 cpk,, i need answers - Myositis Message Board

plzerone · 06-10-2007, 03:09 PM

hello every 1, i had a cpk of 8000, im down to 4200 now, i have problems with stairs and lifting. how long does it take to get back to climbing stars without using the rails? i have had myositis since 1998 and my cpk always hung around 3-4000. im currently taking 60 mg of prednisone daily, can i get any advice?

vonboo · 06-28-2007, 01:19 AM

I am sorry that you haven't had any replys to your question I find this board pretty quiet which is why I don't visit often.

I am afraid that I can't really offer you much in the way of advise since I am pretty new with my PM dx and I also have it very mild at the moment so I am not having the same difficulties as you.

However you might want to consider seeing a nautropath or having accupunture both of which have helped me feel better. I do wonder why your dr is not suggesting methotrexate rather than the predisone as my understanding from my dr is that predisone helps with the symptons where as methotexate can induce remission. Don't quote me but you might want to ask your dr about it.

wishing you lots of luck.

tmjtrans · 06-29-2007, 10:42 PM

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!