Dermatomyosits

[Lilly]

Been a while since I have posted. In August of last year I started to itch really badly. It was keeping me awake all night. I have suffered from Psoriasis for about 15 years, and I thought it was just getting worse. I was scrathing to the poit of having sores. I went to see my Dermatologist and because he had seen three people that week with scabies he thought that might be what I had. So he treated me for that. It literaaly took the skin off under my breast, and I just felt worse. That was not the problem. So then my hair started falling out. I developed a purple colored rash on my hands and knees. The Dr ran labs. He thought I had Lupus. Then he ran more labs and diagnosed me with Dermatomyositis. It is a rare (only 5 people in a million get it) autoimmune disease. Bascially my body is turning against my skin. It can also attack my muscles, lungs, and esophogas. So far I have developed a little muscle weakness. He is treating me with Methotroxate (old chemo type drug) and steroids. The Metho. is making my hair fall out even worse. And for two days after I take it I am pretty mush on the couch. It just zaps me. And I am on a low dose. I really feel for people who are on chemo. This disease also can be set off by cancer. Right now I am having test to see if I have cancer. I will have to be monitored closely for the next 5 years for cancer. On a brighter note my Psoriasis cleared up after I got this. Strange huh? Just wanted to share my story. I feel like I am in the fight for my life. Keep me in your prayers.

[AMarthaByHeart]

I will put you on my prayer list. May God give you strength and peace to endure.

[Becca_Anne]

I feel for you! 2 years ago I was diagnosed with Bullous Pemphigoid another rare autoimmune skin disease and had to take high doses of steroids and Cellcept. Methotrexate was another drug I could have been treated with. I hope your treatment is successful in stopping the progression of your disease. Take it easy and be very good to yourself. Rest, good nutrition and try to control your stress level. Get a specialist in your condition,and find support online. I've listed a few forums I found in a quick search.

 

When you are on Pred it is really bad for your bones, you can loose up to 30% of your bone mass in a year. It is recommended to take a osteoporosis medication to preserve your bone mass and get a bone scan before you have been on the Pred very long, with follow up in a year. I took Fosamax even though I am only 39, and I did not lose very much of my bones when I was on the high doses of pred. Now I'm off pred and don't need to take the Fosamax anymore. I see in a quick read that your condition is also treated with Cellcept so if you have questions about that I'd be happy to share my experience. Pretty much I tolerated it well, and there is a program the drug company offers if you don't have insurance to pay for the medication.

 

Some support boards/forums:

 

http://www.dailystrength.org/c/Polymyositi...omyositis/forum

 

http://www.myositissupportgroup.org/DM/

 

http://www.topix.com/forum/drug/cellcept/T0TUJ1AD75AOR160D