I know that photosensitivity questions have been asked a million times on this board, but I'm confused by what I experienced this afternoon and need some input.
As I was driving home from work, I had the window open and my left arm was in the sunlight for a good portion of the drive. As the drive progressed, the skin on my arm began to tingle and it was very red. I stopped at a couple of stores and the skin remained red for the duration of my shopping. Now, about 3-4 hours later, it's not as red (still red, though) but it still tingles every so often. Clearly, it was a reaction to the sun because my right arm is okay and that arm was definitely not in the sun on my drive home.
I have had one other skin/sun reaction since my diagnosis but we were able to trace it back to the antiinflammatory I was on at the time. Now, though, I'm not on anything new - plaquenil, ibuprofen (but none today), levothyroid, vitamin supplements, etc.
Did I have a photosensitive reaction? I don't know what's what!!
Kim, I know you & I have discussed sun before. QUESTION: Have you checked the possibility that LEVOTHYROID can make you more reactive to sun? (Plus anything else you take, too?)
I ask because when my dad started HEART MEDS, he started turning lobster- red in sun. Certain heart meds for sure carry a warning about increased photosensitivity. That's why I'm wondering if levothyroid might carry a similar warning. Hope you are otherwise ok! Take good care, Vee
This sun question tends to confuse me. I have never had the classic malar rash, but my arms tend to get very red and a little bumpy during the course of the day. Then yesterday the whole thing was made worse by the sun! I have looked up some of the drugs I am taking in terms of phototoxicity. Levothyroid doesn't seem to be the culprit. NSAIDs can be the cause, but I didn't take any ibuprofen yesterday. And plaquenil is supposed to HELP photosensitivity. I guess I'll look into the vitamin supplements I'm taking but that would seem odd to me...
Do lupus rashes tingle? It's like a mild pins and needles under the skin and it gets very red, bumpy, and sunburny looking. My boyfriend says I look mottled. Not a very attractive adjective!! : )
Do you wear sunblock? If you do, maybe you're reacting to the particular product you use? Or to some skin product? Or to body soap? Maybe even laundry products? (Some people even react to fabric softeners, esp. the dryer sheet kind, one dermie told me years ago.)
About supplements you take: Yes, I agree, you'd have to wonder about those, too.
I too have the pins and needles tingling after being in the sun or under fluorescent lights. My skin turns red and mottled - but I do not have actual rashes except in certain places. It is very attractive - I feel like I am red and white spotted! Sun block and long sleeves helps to a point, but I still get the same reaction sometimes. I know mine is not medicine related.
To have a sun reaction, you don't have to have a malar rash first or at all. Any portion of your skin that is in the sun may have the reaction - just because of lupus. You may also feel like you're beginning a flare (intensified fatigue and aches) as being in the sun can bring on a flare, too. It's a bummer to have to avoid the sun, but it's more of a bummer to have a flare. If your face is in the sun repeatedly, the lupus mask can become permanent.
I haven't had the malar rash, but it can be noticed if I get overly hot. Before I was told to avoid the sun and to wear protective clothes and SPF45 or higher sunblock, I had the pins and needles sensation and redness on my arms after sun exposure and sometimes even from sunshine through the closed car window. I just wear long sleeves and shield my skin.
Perhaps your confusion could have some wishful thinking mixed in! I certainly miss just going outside on a pretty day without dressing to look like I'm going on safari!! I wish!!
Thanks to all for your input! This lupus journey has been so odd.
It has been horribly gray and storms are brewing here in NY, so the sun issue hasn't been too much of a bother lately. It is so good to hear (but I'm sad to know others experience it too; I hope you all know what I mean) that others have similar sensations/symptoms/reactions. I often think I'm going crazy because no one in my life has any experience with these things!
The sun reactions I have tend to be worse on my left arm. I have suspected that it's because that is the arm that is in the sun when I drive (window closed or open, it doesn't seem to matter). However, I have also noticed that, during the course of my day (I'm a high school teacher), my left arm will get very red and mottled with these white splotches scattered throughout. Then it will fade somewhat only to reappear at various points throughtout the day. It's also on my right arm but it is nowhere near as intense.
You might be right, Barbara. Perhaps my "confusion" is mixed with some wishful thinking. I still have these awesome periods where I feel incredible - healthy, strong, energetic. They are short lived, but I can almost convince myself that my lupus isn't real or I was misdiagnosed. I think that, in the seven (?) stages of grieving, I still slip back to bargaining quite a bit. Bargaining or denial... it's hard to keep all the emotions straight sometimes...
Again, thanks for the input!
Last edited by kimnyc; 05-11-2006 at 06:04 PM.