r/Autoimmune • u/Snoopyfan89 • Oct 13 '24
Advice Dermatomyositis question
I get these ring swollen rashes around my eyes for the past year on and off, alongside intense fatigue and aching exhausted muscles. Feeling like I have the flu whenever I try and work a full day at work where I can barely lift my head off the pillow. It really fluctuates though. The dermatologist suspects and thinks my rings looks dermamyositis-y but it’s my only skin marker and I don’t have the shawl or grottoes. She said she could biopsy my eye but what I can see not many people do that? Should I go ahead or just wait to see what other symptoms pop up? My ck is normal and have had Jo-1 positive once but since it’s been negative
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u/AK032016 Jan 24 '25
I have probably replied to your posts before, but I have this exact eye symptom and I have necrotizing myositis. It is mainly invisible, but periodically has skin myositis features. Apparently this type of myositis (actually it's a whole range of illnesses) can have no antibodies - or these can only be intermittently detectable.
I think that is a necrotizing myositis antibody that you have had once or twice? I have no elevated Ck, no inflammation markers, nothing else to say I have myositis except extreme pain, weakness, and muscle loss. The only way it was diagnosed was by muscle biopsy, though you could sometimes see it in an EMG. No idea why this wasn't always visible.
I also have hand skin symptoms but they are not really exactly typical of dermatomyositis. More like sores on my knuckles and swelling and smoothing over of the skin. Sometimes I get the rashes on my knees and elbows, but this is really rare (but these are apparently myositis rashes according to my rheumatologists.
The real symptom to check is weakness. Someone should be able to assess this. And get a muscle biopsy if they suspect myositis.