Dana Rae
Message 1 of 1
Hello!! I was dx with dermatomyositis about a year ago. I am now in remission, after going through hell and back. I am off all 15 of my meds. and the only thing I am taking now is some pill from GNC to help my hair grow back. I have very rough mornings and can't get out of bed until someone helps me stretch out all of my muscles. I have missed my morning class because of it and sometimes it still takes me 30 mins to walk up 20 steps. I sleep a lot, I always feel like I've just finished a two hour workout. But I am afraid to tell my doctors because they said that they would put me on a stronger dose, and the one I had before almost killed me. Not to mention the fact that I was not myself while on those meds. I would rather die than go through all of that again. Could someone please give me some good advice on what I should do...do I just need to suck it up and go back to the docs?? Has anyone out there gone into remission and only two months later have symtoms come back?? If so, how did things go and what did you do?? Was it worse than the first time or better? I would love to chat with anyone who has dermatomyositis or knows anyone who has it. Thanks for your time and best wishes!!