Relatively new to DLE. I have been told to "stay out of the sun". I wear a daily sunscreen with Mexoryl for UVA blocking, and have started an additional SPF of 85 now that the weather is warming and I am outside more. I have readjusted my wardrobe to include some hats and longer sleeved shirts. I guess I am wondering if this is enough? I like to garden and have two little kids - we are outside alot. How seriously and to what extent do I need to be "staying out of the sun"? What does that mean? Trying to figure it all out. Thanks for your thoughts.
Eros, hi & welcome. I was positive for anti-Ro, and apparently this subgroup is thought to be usually very photosensitive. So I didn't attempt midday sun until I'd been on Plaquenil for over a year. Then I tried. Results not good: big headache, body pain, GI misery, and the only rash I'd gotten since being Dx'ed. I took that as my answer. Since then, I avoid sun from roughly 10AM to 4 PM. During those hours, I'll drive, walk dog quickly, or dash in & out of stores. But no prolonged exposure, is what I mean. Always wear a hat, also cover my arms & legs. And block on all exposed skin.
I think photosensitivity varies widely in lupus, so we all have to find our individual tolerance.
Have you seen the sticky posts (= permanent info posts) at top of thread list? They contain useful info, including reading resources. Hope you post more soon. With warm wishes, Vee
Hi, i had been diagnosed with disciod lupus. i too was prescribed with plaquenil, and told to stay out of the sun and wear sunscreen. im a native to the pacific islands, and i cant believe, that i have to stay out of the sun! i grew up in the sun i had jobs working in the sun! what i hate is always having to put on sunscreen to go from point A to Point B! i get to work and my face is greasy!
I wish i could have the skin of my youth back. i get the flares ups once in a while, and when i do i get the questions, hey whats wrong with your skin? its all red and bumpY! i wish there was a for sure cure for this! it just seems like guess work on how to treat it. if you have ever read about plaquenil, they say its used to treat malaria and seems to help lupus, but they are not sure how it works for lupus! oh well i guess i gotta be a vampire for the rest of my life!
louv, I hate the no-sun thing, too. But I had many things wrong beyond skin, so perhaps it was easier for me to accept the reality. But your having discoid lesions does mean you're at some risk for further (systemic) problems, not to mention you don't want scars or permanent hair loss...
Under my foundation, I wear a 32 SPF moisturizer (never standard sunscreen on my face). Hats of tight weave with broad brims. Long sleeves & pants. Limit midday sun (10-4). But at night I go bare-legged, hatless and sleeveless freely, as I personally seem to react to UV-B, not to UV-A.
Plaquenil has actually been used for 50+ years, I think. I love the stuff, as it gave me my life back.
I'm sorry you're struggling with this. But when I see women my age having facelifts & Botox, then see far less damage on my skin, I think as a society we err in valuing our suntans NOW over decrepitude LATER. And vent all you want---that's allowed---maybe expected? Hang in there! Best wishes, Vee