Topic of the discussion
Posted on 9/13/18 2:59 AM
According to Andrew G. Franks, Jr., MD, director, Skin Lupus and Autoimmune Connective Tissue Disease Center and clinical professor of dermatology and medicine (rheumatology) at New York University School of Medicine[,] "Patients with lupus need to avoid ultraviolet [light]. We want them to be sun-conscious and sun-educated... It's very important, whether you're photosensitive or not," he says. You may not get a rash after UV exposure, but there could be an increase in auto-antibody production, which can create disequilibrium in the status of your lupus. (WebMD)
Therefore, sunblock is very important. The topic of sunblock is one that is highly debated in terms of which is the best; however, must dermatoligists and other medical practictioners believe that a good sunscreen must be "broad-spectrum sunscreen, which protects against both UVA and UVB rays. (UVA rays prematurely age skin and UVB rays burn; both can cause skin cancer.) Choose one with an SPF of at least 30 that's also water resistant. (Prevention)
What sunscreen do you use?
Do you use any other protective measures, such as sun protective clothing, hats, SunGuard Laundry Treatment, etc.?
Beginning of the discussion - 7/11/19Sun and Lupus - what sunscreen and protective measures do you use? https://www.carenity.us/forum/lupus/your-opinion-on-lupus-treatment/sun-and-lupus-what-sunscreen-and-protective-measures-do-you-use-449
Posted on 7/11/19 3:38 AM
I use SUPERGOOP! Unseen Broad Spectrum SPF 40. I get it from Sephora. It is costly, but if I do happen to be out in the sun, I cover any exposed skin with it. However, I do use clothes to cover up most of my skin, including a brimmed hat.
Posted on 7/11/19 3:39 AM
It has been beneficial in fighting off excess sun exposure.
Posted on 7/29/19 4:18 AM
This lupus is still new to me, as I've only been diagnosed with it less than 8mths. I'm fighting lupus and interstitial lung disease. The lupus and the medicines I'm taking for both diseases say not to be in the sun because it makes me hypersensitive. On the generic CellCept for the lung disease I'm supposed to cover my arms, legs and head. I hate it because my family wants to do things outside for the Summer and I feel so limited. I've been finding shady places to stay in and going out in shorts and t-shirts. Something I've noticed is I've tanned really fast!! The heat and humidity seems like it zaps my energy really quickly and lately I've been in some amount of pain. I'm having to adjust between being mindful of the diseases while trying to balance time with my family.
Posted on 8/2/19 4:08 AM
@johnboy7981 yes being in the sun is a challenge and we must caution against it or we can send ourselves into more pain or even worse, a full blown out flare! Have you looked into the UV protection clothing they sell? It is not the most fashionable but it offers more protection for people like us who need to be careful with UV rays. Have you looked into that?
Posted on 8/2/19 4:11 AM
Proper protective measures will help you better be able to enjoy time out with your families with less stress and anxiety; however, even with protective clothing or just long-covering clothing and sunscreen and a wide brim hat we still must be careful. We should not spend excessive time even with those measures in the sun. The other day I was volunteering for an MS Walk here. It was early in the morning 7:30 am to 10:30 am so I knew I would not be out in the strongest of the sun, but I still did all the measures I mentioned above with my UV protective clothing and then went under the shade under the tree and sat there and then only got up and walked to the volunteer table when a walker came to get water - so I minimized greatly my time in the sun.
Posted on 8/2/19 7:55 PM
@mvn481 interesting to read, as I've not heard of or tried the UV protective clothing. I'll have to keep a lookout and see if I can try them. Thanks for the information.
Posted on 8/21/19 3:21 AM
@johnboy7981 photosensitivity is a common symptom or complication of lupus. I read somewhere that a majority of those with lupus have some degree of photsensitivity, which varies from a skin rash reaction from the sun to an increase in other lupus symptoms like joint pain and fatigue... the symptoms you say you are experiencing as a result.
@mvn481 did offer some good recommendations. I would recommend on the days you are out in the sun be sure to apply a liberal amount of SPF 40 or higher sunscreen that protects again both UV rays.
I would also recommend you looking at the interior of your house, if you have severe photosensitivity: use shades to block UV rays from coming in the window and hitting you as you read a book or watch tv... and consider tinting your car windows if you drive a lot.