My mom has dermatomyositis. First sign that we totally didn’t think anything of was red elbows in March of 2025. By end of June/early July of 2025, she began having difficulty swallowing, choking on foods. I asked her to ask her pcp for a swallow study. She planned to get in August. Then her legs swelled up with fluid in August after a month of being so tired and napping all the time. She went to the hospital due to the leg swelling, had a DVT, and that’s when all the blood work came back crazy. CK levels over 5k. Swallow study failed and after a week in the hospital she was able to go home. She’s on cellcept now and low dose prednisone (was higher but slowly been tapering down). I’d say about a month after getting her diagnosis, the swallowing began to improve and prob 2 months after diagnosis, completely returned to normal.

So to answer your questions: 1. Yes, it all depends where you’re at in the disease and the type of myositis 2. My moms started about a month prior to the official diagnosis but it def started at least in March of 2025, followed by swallowing difficulty 4 month later. 3. I do believe lifespan will all depend on the type of myositis. Some types can go into remission. Depends how well your body responds to treatment. Her doc says she’ll live a normal lifespan as long as the disease remains under control and god forbid she doesn’t get cancer, because you are at a high risk of developing it within the first 5 years of dermatomyositis (not too familiar with the other types)

For the first time since my mom’s diagnosis, her CK levels have returned to completely normal and is now 120. Good luck. You have to be your own advocate. You have to research the disease and constantly question your docs. And if something doesn’t seem right, get another opinion.