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.