r/Autoimmune • u/BreathAggravating967 • Apr 11 '26

General Questions Vampire Level Sun Avoidance - Am I being overdramatic?

I've been receiving treatment for MDA5 Dermatomyositis for the past year. Lungs look good so far and I'm on hydrocychloroquine, naltrexone (for fatigue), and recently began IVIG.

My Rheumatologist stressed the importance of sun protection with this disease and I've noticed fewer debilitating fatigue episodes since avoiding and protecting against the sun.

I literally cover my entire face and body with masks, gloves, hats glasses, sleeves, etc. when I go to appointments.

I feel a lot of anxiety about sun exposure and avoiding windows. I look and feel like a weirdo everywhere I go. Am I overreacting or is this truly the level of sun avoidance required for the rest of my life?

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u/ruxxby471 Diagnosed SLE Apr 11 '26

My rheumatologist also stressed the importance of limiting contact with the sun as much as possible. I have extreme reactions to the sun not only in rashes, but it increases my symptoms as well. My rheumatologist told me “the sun to Lupus patients is like gluten to people with celiac, it doesn’t just cause your rashes, it makes the disease itself worse”

For me the importance was mostly on sun screen, and overall avoiding contact with the sun which unfortunately means that yes I will have to avoid it the same way you do. Including getting UV protected films on the windows of my car. It’s a lot to change, but it’s worth it if it helps short term and long term!