Amyopathic dermatomyositis

Any one familiar with Amyopathic dermatomyositis ?

Yes its what I have.

Mspinky could you tell me your experience with this I’m trying to figure all of this out

I have been dx with amyopathic Dermatomyositis after blood work and no muscle involvement. Right now my only issue is hair loss and some itching around base of scalp off and on. Not sure at this point if it is the disease or meds or both causing the hair loss. It is depressing watching my hair slowly disappear. I was on prednisone and have been on Methotrexate. The worst part is having to avoid the sun and covering up when going outside.

Do you have DM?

Well the skin byopsy came back positive but all of the other test show that it’s not in my muscles so far . By hair is thining out it was thining before I found out that I had DM ,I agree about having to stay out of the sun I love camping and boating it’s been hard to try to in joy those things now.

Hi Barbara -

My Rheumatologist has told me that Amyopathic dermatomyositis is simply the skin symptoms of DM, without the muscle involvement. This can change over time to include muscular symptoms, but for the time being, can be either the start of DM in the body, or simply the only part of the disease that you may experience.

I have also read that Amyopathic dermatomyositis can also include the skin/rash symptoms similar to lupus patients, but no actual lupus.

Hope you're able to continue to get more information from your rheumatologist and that you have a great dermatologist to work with as well (mine has been a real life saver to me!).

I have also been diagnosed with Amyopathic dermatomyositis, based on skin biopsy and rash presentation, all bloodwork has been normal. I have been having a lot of shedding hair as well, but that could be the hypothyroidism. Avoiding the sun has been rough, especially over the summer when my kids would want me to come out and push them on the swing. The sunblock helps, but not 100 percent. Has anyone had luck with a good makeup to blend out some of the facial redness?