Hi all. I was just diagnosed with dermatomyocitis a week ago. I am really starting to freak out. It's scary, depressing. I always try to have a positive...
-Hi Mkessler, so sorry to hear that you are having to join the club, don't be afraid, you have the good fortune to have found us all for all your support and...
Hi again all; Just polling around to see if what Susan is going through is normal, and if it will get better... She must be going through a flare-up now,...
Hi, It is definitely scary in the beginning but it truly does get better. I am in remission now for over a year and feeling good. It has it's ups and downs and...
Excellent! Thank you for sharing this, talk about lifting spirits! ... ____________________________________________________________________________________ ...
Just a word of advise. If she is spending that much time in bed, she will take longer to gain back her strength. When I was having the same problems I made...
I agree with that! If it weren't for my son, I too would have been in bed a ton. I find I have regained a lot of strength due to using it always. I kept...
Good advice, thanks. She is actually the athletic type, and tries to continue her active lifestyle. We go for walks, and she tries to exercise as much as ...
Hi Luc, My husband Corey was diagnosed last March with DM ( you can read my pervious post about it), But just want to encourage you and Susan to hang in there,...
Lately I've seen lots of people struggling with just being diagnosed and all of the sometimes overwhelming and strange symptoms. I am a nurse and have been...
Hi, Sorry to hear that you are feeling this way. I think most of us will agree that all of this can be very frightening; especially at the beginning. Arm...
One thing that really helped me was swimming. It was the only thing that I could do that would not hurt excercise wise. I hope that helps! Luc Bouchet...
Has anyone been on any anti-malaria drug therapy? I have ran across this cream that was used in a clinical trial called Quinacrine. There was supposed to be...
Hi to all, I was diognosed early October 07 and was hospitalised for 8 weeks. I was virtually bed ridden with no pain but was so weak in the muscles of my legs...
I am currently on Quinacrine 100mg. I do have it made at a compound pharmacy. I think it was pulled due to causing birth defects. You cannot get pregnant or...
... 13:39:46 +0000Subject: [Dermatomyositis Support] Re: Just diagnosed ... club, don't be afraid, you have the good fortune to have found us all for all your...
Hello, I've posted this before but it's been awhile so I thought I'd ask again. I was diagnosed with DM in Dec/07. At the same time I was told that my...
Lisa, First of all, I am very sorry that your ILD hasn't improved. You certainly have been dealt one of the worse complications of this illness. My heart...
Lisa, We will all be praying for you as you deal with this. I too have not had to go through this part of DM. Thank heavens for people like Kim who have been...
Hi Lisa, I don't know if anyone else has suggested it but maybe you should check out the Myositis association http://www.myositis.org . You may find someone...
Hi. I have been on Plaquenil for almost 2 weeks. Dr. told me that if rash got worse, to stop using it. It gets a little better, then a little worse. My...
I just wanted to ask the group about a little shortness of breath. Whenever I do simple tasks, for example tonight I went to the grocery store and just pushing...
Hi Mary, I took Plaquenil for almost one month during last May. My rash got worse and spread down my arms, to my trunk and elsewhere. My derm decided to take...
Mary, I am on Plaquenil and it helped in my case, although it took a good four weeks to see results. During those four weeks, my rash would flare if I did too...
I took plaquenil for a short amount of time too before I broke out in a rash caused by an allergic reaction (I could tell it was different from the DM rash --...
Hey all, I was on Plaquenil for about eight years to treat my rashes and itching. I eventually became allergic to it because you can only take so much in a...
Thank you all for your responses! This is great! I hope you are all doing well. From reading responses, I'm wondering, how many of you have noticed rash or...
