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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyLupusTeam Member asked a question 💭
Lexington, KY

I was diagnosed with lupus in 2016 after 2 years of being told I had rosacea and acne. Im 26 and have spent years playing college golf & living an active lifestyle outside. Beach/ Pool/ competitive horseback rider etc. Never put two and two together that every time I was in the sun, 24- 48 hours after I developed an extreme rash with swelling and painful burning blisters. It started out mild for the first year. I took pictures of every rash I got. No one believed me that it wasn’t acne. Then… read more

June 24, 2019 (edited)
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A MyLupusTeam Member

At the beginning of my diagnosis I use to be deathly allergic to the sun within minutes I use to get severely nauseous (which led to non stop puking),dizzy,weak,my skin felt like it was being burned,and I got a itchy rash wherever the sun hit.I couldn't even have the lights on in my own home I had light blocking curtains I walked around with dark sunglasses all the time.Now 5 years later I can stand the sun better I can have the lights on in my home I can go to the store I can be in direct sunlight(30-45 minutes) and indirect sunlight(4 hours)I still need to wear hat,upf clothes,and sunblock I still get backlash but nowhere near as bad I get a headache,fever, butterfly rash,and a rash on my wrists and forearms

June 24, 2019
A MyLupusTeam Member

I found 100 spf..its helped hugely!

June 24, 2019
A MyLupusTeam Member

Sorry you are going through such severe reActions. Hopefully there is a prescription cream or med so you don't have to be a vampire. Let us know how it goes.

June 24, 2019
A MyLupusTeam Member

Yes I am very bad with the sun. I wear a hat and sunblock everyday. I recommend light turtle necks and layers are good because if it's something that the sun can get through it doesn't help much. Waterproof sunblock is good because you can't sweat it off. I think chemical and physical sunscreen (titanium dioxide or zinc oxide) mixture is better than just a chemical one.

June 24, 2019
A MyLupusTeam Member

I cannot go out in the sun. I do not mind because I know the sun is my enemy and makes me so very ill. I have to wear sunglasses in the stores due to the fluorescent lighting. I have to cover my whole body if I do go out and wear a hospital mask as well. I can tolerate it because the alternative is to make me extremely sick to the point of being in bed for a month instead of having to rest for a day or so.

June 24, 2019

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