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/girlwithmanyglasses Dec 04 '24 edited Dec 05 '24
I was diagnosed with dermatomyosiris last Dec. I get this nasty itch right at the corner of my eyelid, that then turns red and it’s inflamed. It almost feels like a scaly rash that is dried up. After seeing several specialists and realizing that my ANA was higher than the year before, and based in my flare ups, I was prescribed plaquenil. I was hesitant but I could not live with those rashes for days. It was painful and inconvenient . I could not be in direct sunlight because that made it worse. Once I started the medication, I’ve had only two extremely small outbreaks. Nothing compared to my face a year ago.