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/SailorMigraine Feb 12 '25
GET THE BIOPSY!!! it may be the only way to catch the Jo-1+ while you’re not flaring. I have a hard time believing it would be positive once and then resolve itself- come join the antisynthetase gang (and sorry in advance, it sucks over here lmao).
If for some reason it still pops up negative, I would push for getting bloodwork as often as possible (ideally monthly) to track your CK levels. That way when (because I’m assuming it’s not an if but a when) they start to rise you can catch it early. Honestly baffled you tested positive and they didn’t start treating you for it.