I have not had a photosensitive rash since well before my diagnosis and I have NEVER had the malar rash! As a kid living in Cali I was outside all the time and had the dark skin to prove it! After spending 3+yrs in England and then moving to NE, I haven't even been sunburned for prolly 10 years and not from lack of trying...but today I actually got some sun! Very odd for me!. Just curious...anyone else notice no effect from the sun...I should mention the heat effects me, zaps my energy, my… read more
I was diagnosed with lupus in 1995 after suffering from deferent symptoms and rashes for two years. After I was diagnosed with SLE and getting on Plaquenil and prednisone I had not suffered from rashes until last year, it got so bad on my face body and scalp that I have lost hair. I'm seeing a dermatologist and he has put me on two deferent creams for the face a special shampoo for my scalp and injection to stop the hair loss and inflammation. On May 1st I started on a raw vegan diet and I'm getting really amazing results. My sed rate was 78 in February and 66 in April my Dr wanted to put me back on steroids and a light chemo but I said no, I wanted to try this raw vegan diet. Well it worked on May 24 my sed rate was normal at 22, this raw vegan diet has help me so much. I recommend you all to try it. Sending you all love and gentle hugs. Xoxo
Great question. When I am out in the sun I get a redness across the bridge of my nose and upper cheeks. It goes away or lightens up once I get in shade. My skin actually looks like I smeared make-up where the molar rash wound be( I don't wear any). I am also sensitive to the light, it's too bright and I have to wear shades.
I don't get the malar rash on my face. I've always been a sun lover. Stay on the beach all day long but I started getting like sun poison on my legs and it would itch like crazy. Plus I would always end up getting sick which now I look back and realize the sun was making me flare. Since I've been so sick these last 8 yrs I haven't been to the beach or the pool. Today, though, I went to the dr. It is very sunny and warm today and I had on very thin capris. I noticed by the time I got to the office my upper leg that was in the sun next to the window just started burning and itching like crazy. Now that I am better I'm hoping to get out in the sun and go swimming some. I will be very careful and stay covered in Sunscreen because I don't know what could happen after all these years.
Being out in the sun can cause a Lupus Flare and it's VERY important for you to stay out of the sun when it is out at the highest. (Don't know weather terminology). Stay in shaded area's, wear a hat and light colored clothing. When you do venture out in the sun wear a good sunscreen . Stay hydrated too.
I'm also VERY heat sensitive. My fingers, hands, and even my toes swell up. The sun makes me dizzy too. It does zap my what energy I have. You may not notice immediately any negative health effects rightaway, but they do show-up.
We can still enjoy the sunlight. Being out in the morning or early evening is best and of course we can enjoy it from staying in the shade!!!!
The sun ..even Winter sun affects me badly. I get almost instant pain in the area where it got me. Extremely photosensitive..feels on my skin like acid. Burns even through some clothing. Reflects from walls..paving etc .wear gloves..long sleeves and scarf wraped over head and neck with sunglasses