u/Single_Calendar4427

I’ve been dealing with recurrent facial inflammation for almost a year and am curious whether anyone with dermatomyositis has experienced similar eye involvement.

My eyelids and the area underneath my eyes become red/purplish, irritated and sometimes swollen, with significant dryness/flaking. I also get redness, extreme dryness and cracking around my mouth and other areas of my face. The eye involvement is often bilateral like it is in these photos.

I’ve seen multiple dermatologists and have gotten conflicting opinions. A punch biopsy showed interface dermatitis with necrotic keratinocytes, and dermatomyositis/autoimmune connective-tissue disease has been considered. My ANA is 1:320, but my myositis antibody panel has been negative and I don’t have muscle weakness.
Another dermatologist feels strongly that this is allergic contact dermatitis and wants me to repeat patch testing and the biopsy.

Hydroxychloroquine seems to have calmed things down overall, and Opzelura was by far the most effective topical I tried before pregnancy, but I still get episodes like this.

For anyone with cutaneous/amyopathic dermatomyositis: did your eye involvement ever look similar to these photos? Did you have the purplish/red eyelid discoloration along with redness underneath the eyes, swelling or scaling/dryness on the lids?

I know Reddit can’t diagnose this and I’m continuing to work with dermatology/rheumatology. I’m mainly interested in hearing what eye involvement has looked like for people with DM versus those who have dealt with allergic contact dermatitis.

7 months ago, I developed eczema-like flare ups around my eyes and mouth. Mostly on the left side of my face. The rings around my eyes and corners of my mouth got scaly and burning. No topical steroid creams helped. I went through full environmental, food and chemical patch testing, all inconclusive. It is confined to my face, no joint or muscle weakness. A lot of fatigue. Flax seed oil helps keep the inflammation down a bit. Also I should mention it’s more like a heliotrope than a butterfly lupus pattern.

A biopsy confirmed its interface dermatitis with necrotic keratinocytes. I have positive ANA with speckled pattern 1:160. My RNP (connective tissue) hovers around the line for abnormal but not a major positive. I have negative markers for the 9 major autoimmune diseases.

I’m a bit stumped and so is my doctor. Wondering if this sounds like something specific to anyone else. I should mention no new meds in the last year.

Does this look like heliotrope discoloration/dermatomyositis?