I have just been diagnosed with dermatomyositis after a biopsy after what doctors thought was lupus for 4 years which kept getting worse. I am unable to walk more than about 4 - 5 minutes or stand for longer than 3 minutes. I hurt all the time. If it keeps progressing I will have to start using a wheelchair or a walker. I just started on Cellcept, have been on Plaquenil. How many people have Dermatomyositis? Are there many people on this page? I know very little about it. Will I ever get better? I heard sometimes it can go into remission and you can get off the meds. Has anyone heard about this? I'm new to this board. Thanks! Suzy
Hi Suzy,
I also have DM and yes, it does suck! While all patients are different, I seem to do very well (not quite in remission, but pretty darn close) on Methotrexate (MTX). I'm currently attempting to taper off to try and have a baby and I'm incredibly sick right now. We'll likely be getting me back on the MTX soon and see if we can adopt instead, because I just can't take it anymore.
Yes, some are able to get the disease into a remissive state, but even if not totally dormant, you can feel pretty good with the right medication and treatment plan. It did take me a few years to get my own ironed out, and while I still longed to feel better than I did - now I would give anything to feel that crappy now!
There are quite a few of us in this group with DM. We have a DM chat group here: Dermatomyositis Warriors
Hopefully, once you get the right medication on board, you'll get a little stronger. It's a case-by-case situation in terms of whether the muscle tissue will regenerate after damaged, but having your Dr. prescribe a little PT and core strengthening would likely help (it has helped me).
I was diagnosed in 2010 and it has been a journey full of ups and downs - please feel free to reach out to me with any questions.
M