i have Dermatomyositis diagnosed 2012 yes its no fun i woke up with head itching face eyes neck, red and purple hit hard and fast, overnight for me finally itched myself crazy fell asleep woke up and had absolutely no strenghth in any muscles even my neck. off to doc first they thought lupus as ususal i hear. then ANA test by UCSF and positive for dermatomyositis prednisone daily helped still on it but now have to take fosamax infused due to bone density, but what really helped me was rituxan infusions a form of chemotherapy used for cancers but i was given the options to do ivig or rituxan i opted for rituxan due to i have mixed autoimmune at the time it kinda dominoed on me to other autoimmune diseases I have RA, osteoperosis osteo necrosis and sclerodrema sclerosis. Your mother depending on her doctor usally a RA doctor deals with this is to put her on methotrexate oral or self inject i should mention I did this for a year along with prednisone it is a big help but since i have mixed or overlap i had to go to a bit more. so Rituxan. But your mother should be put on methotrexate and maybe prednisone also depending on her bone density bone scan because of her age. I was 47 now im 53 prednisone is great but it did cause loss of bone density so now i need fosamax infused I cant take orally as i get ill. Methotrexate and also Humira are 2 being used for the inflammation of dermatomyositis and how it attacks the muscles and joints because with it you get RA, i need hip replacement next. speak with her doctor about Methotrexate as it has been used for a long time and also Plaquenil which is a anti malarial drug but found to reduce inflammation in patients so they can get of a steroid like prednisone. I cant I tried plaquenil but 3 weeks into it got hives. this was a unusual reaction so they took me immediately off. back to upping my prednisone again. the itching goes away with prednisone and methotrexate will help with muscle strenght and inflammation RA symtoms feel free to email me with any questions as Ive pretty much been thru it all. I itched by head so bad on top in beginning I started to look like Terry Bradshaw and Im a woman, wig time. but hair grew back with this disease hair loss is common.

oh my email is vllymedtec@aol.com, im a biomedical engineer repair and calibrate medical equipment, kind of ironic huh I keep my humor, tell your mom shes not alone at all theres more of us, theres group meetings for this also for dermatomyositis polymyositis and inclusive body myositis . kimberly

Kimberly,
Thank you so much for all the info. It is a lot to take in. Unfortunately, my mom is allergic to prednisone. She's currently on monthly infusion treatments, which have helped inmensely. Her hair has grown back, even though she likes to keep it short. She's cute, looks like a newborn chick. The itching can still be a huge burden at times. I appreciate sharing your journey with this horrible monster disease!

3 years back, I had a biopsied rash called gottron's papules (indicating DM) and the pain/itch was HORRID! it woke me from my sleep. I also got the terrible itching on my elbow and still do on occasion.
Not only do I have DM, I also have Celiac, so going gluten free was necessary, but I had no idea some of the itching is made worse by gluten. Maybe you mom would consider getting tested for Celiac. Many symptoms left when I began eating only whole organic foods. No grains either, rice gives me seizures. Gluten free products are mostly rice and not healthy. Good luck!

My daughter is 19 and has polymyositis srp positive. She does not respond well to meds. She has been on prednisone, methotrexate, ivig, rutuxin, solymedrol, and is now on cytocin. The doctor will have to see what meds she responds to the best. My daughter is taking cytocin and prednisone daily. Once a week she gets a shot of methotrexate. She gets her infushion of ivig and solymedrol monthly. She is in a little pain and has major muscle weakness. She is slowly getting some strength back but was bed bound for a little while. She has home physical therapy 2 times a week which seems to be helping her out. She did have a rash on her upper arms. She had got them biopsied and it was a inflammation rash.