dermatomyositis please read - Myositis Message Board

AboutLori · 03-21-2003, 07:02 PM

I am posting this message for my father as he doesnt have a computer. My father is a 57 yr old retired Ny city firefighter who was recently diagnosed with Dermatomyositis. He is in the early stages of the disease and would like some information. So far he has been screened for cancer and he is free from all kinds. He is on daily prednasone and shots of amethotrexate (I think). He has had 2 gammaglobulin infusions and a muscle biopsy. All things are going in a positive direction right now. He would like some feedback from someone who also has this disease and is farther down the road with it than he is so he can know what to expect. Any information would be helpful from someone who has experienced it themselves. It would make him feel so much better. Thanks in advance.

ChrisLS · 03-25-2003, 09:53 PM

I was diagnosed in August 2002, so I'm not far down the road, but I thought you might be interested in my treatment so far.

I have quite a bit of skin rash (face, neck, shoulders, hips), swollen cuticles on my fingers. By Sept. 2002, my muscles were really sore, and I ran out of energy by 3:00pm. No malignancies were found when I was evaluated in October.

I am on Prednisone and weekly Methotrexate injections. I have very little soreness, and my energy has returned, although I would put it at about 90% of normal. My blood work is now normal. The rashes have continued to spread, however, and I am being sent to Johns Hopkins to be evaluated for CellCept.

Hope this helps...

ChrisLS

TheLadyM · 04-17-2003, 07:55 PM

Hi
I was diagnosed with Dermatomyositis back in '96. Never thought I would be able to pronounce it much less spell it. It took 4 different doctors to finally figure out what I had the last one was a Dermatologist. I had the rash <the shawl effect as well as the butterfly effect> on my face as well as back and chest even in my scalp down my arms to my wrist. My knuckles had the Gottrons papuales and I had Reynalds Syndrome as well. My cuticles were always red puffy and inflamed. TO the doctor I was a dream come true an actual case he could poke and prod at and take pictures of. To my family and friends I was a little scarey looking.
I had joint pain in both hands shoulders knees and ankles. There were days when I couldn't get out of bed with out help and getting dressed became an major ordeal for me as well. The doctors put me on Prednisone right away. Because I had the rheumatoid arthritis as well I was put on Relefin back then but it didn't help I went through so many different medications til I finally ended up on Celebrex for the arthritis. Plaquinil came in to help take care of the rash and it did. I could look in the mirror again and not be scared or scare others. I was on the plaquinil for a little over two years. The problem with that is it settles behind the retina and can cause damage to your eyesight. So I come off it completely and when a small area shows the rash coming back I go back on it for a short time and it goes away. I started taking methatrexate as well because the arthritis just wasn't going away with the celebrex alone. Along with that I had to take Iron pills because I was anemic and folic acid to replace what the methatrexate takes out. I would say it took a year of taking all these meds every day before I really saw the results.
Here it is 7 yrs later I don't have the rash flair ups anymore. The arthritis is somewhat under control. Some days better than others. I see the doc now every 3 months instead of once a week.

I still have problems with the anemia as well. I know that this is going to be with me the rest of my life and I do research on it once in a while to keep up to date with things. I wish I could say it all gets better but that would be a lie. It does get manageable and you learn to take it one day at a time some weeks. Please feel free to ask any question you have perhaps I can help in one way or another.
warm regards
Missy