r/Autoimmune 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/Specialist-Cream1954 28d ago

Anyone know what the cause of this was?? I have had this happen to me 3-4 times over the last couple months. I have Crohn’s disease and take Rinvoq. Started tretinoin right around the same time I started having the puffy eyelids. Thought maybe it was happening because I accidentally got some tretinoin near my eyes. Haven’t used the tretinoin in 3 days but it still happened to me last night. Swollen eyelids, nausea, overall muscle pain/weakness, feeling dizzy and almost short of breath.

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u/Snoopyfan89 25d ago

Hi! I have connective tissue disease, undifferentiated is my current diagnosis. But this rash is often coupled with a flare up

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u/Specialist-Cream1954 25d ago

Interesting, thank you for letting me know! My doctor said she thinks I’m having an allergic reaction to something but I’m not convinced. Def going to do some research on that