I went to the Mayo Clinic recently for a second opinion, and was told that everyone that has lupus gets a rash from the sun. Is this the case with you guys? I periodically get the malar rash, but not in connection with the sun. All I've noticed is that the day after being in the sun, I feel crappy. Fatigued and achey. My malar rash has been documented by a physician, but the Mayo Clinic is saying that the rash has to be connected with the sun to count. Answers?
I have heard that the discoid lupus people get the rash when out in the sun. Only a certain persentage of systemic lupus people get the rash. I have systemic lupus and I get the rash across my nose and my hands and arms when out in the sun. But the good news is, if you want to call it that, since my diagnoses of MS my lupus has been in remission. I still have the "poison ivy" look (people are always asking if I have poison ivy and I just gave up with any kind of explaination, just say ya that's what it is) but it's not nearly as bad as before the MS dx. The Mayo Clinic is very well known and respected - so is the Cleveland Clinic (which is where I live). Quacks abound in all places and you just have to weed them out
Pambyboo, I just went into the HSS (Hosp. for Special Surgery) site, the one cited in the first "sticky post" at the top of the Board, which the moderators permitted to be put up.
Wow. A LOT of info there on all aspects of lupus. I looked in two places:
(1) the middle of the home page, a yellow panel, where there's a link for an article on Skin in lupus article (one of the best I've ever seen, with many rashes described that go beyond malar, DLE & SCLE); and
(2) on left of panel, I "drilled down" from into Rheumatology, then further down into lupus. There's a ton of articles on skin, CNS manifestations, kidney---everything.
BUT---none of the skin info I just read says that a malar rash HAS TO BE photosensitive. Malar rash is only one of the four criteria dealing with skin, and "photosensitivity" is a separate criteria entirely within the "skin" category.
Hmmmmmmmm....? Very confusing. If I find anything else, I'll post again. I understand how frustrated you must be, having been there myself for many moons. Best wishes, Vee