micheller Posted May 14, 2012 Report Share Posted May 14, 2012 Does anyone else have a sun allergy?? I was out in the sun for about a half hour today reading and my leg that was facing the sun feels like it's sunburnt and is rashy. I also broke out on my hands and along my jaw line. This has happened before but never connected the two. Quote Link to comment Share on other sites More sharing options...
mully2014 Posted May 14, 2012 Report Share Posted May 14, 2012 Yeah even when I'm outside for 15 minutes and it is sunny out I will get a weird red blotchy stuff wherever the sun was hitting me. I didn't have this kind of reaction before this condition but I don't know if any of my meds make me sun sensitive. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 14, 2012 Report Share Posted May 14, 2012 I have that, too. If it is warm weather sun, the best way for me to explain it is I literally feel like I put my arms and legs under an oven broiler!! I have splotches that get bright red from being in the sun.My doctor tested me for porphyria, just one random blood test. It was negative, but I since learned there are better in-depth tests that should be done. I did the "poor mans" urine test where you put half of your first morning urine out in the sun for the day. The other half stays in a dark room. I did it three times, and all three times my urined turned a dark tea color. I took a picture of the two specimens side by side, and showed it to my doctor. He wanted a copy of the picture and said he was going to do more research on all this. I would add a picture, but I don't know how. Quote Link to comment Share on other sites More sharing options...
micheller Posted May 14, 2012 Author Report Share Posted May 14, 2012 Thanks for the replies! My fiance says I'm crazy. HAHA Yeah I kind of am. I didn't know there was an 'at home' test for it. Interesting. I wonder what's causing it. Quote Link to comment Share on other sites More sharing options...
issie Posted May 15, 2012 Report Share Posted May 15, 2012 I've always had issues with what they called sun poisoning - a really awful blistering rash that itches and hurts. I have to be careful in the sun and when I was younger wear sunscreen with PABA in it. That is supposed to keep you from getting it. Now days, they took that out of sunscreen - cause I guess some are allergic to it. But, it always prevented me from getting it. Now, I have vitiligo and am not supposed to get in the sun - cause my immune system is attacking my melanin and I'll burn within a matter of minutes. So, don't get enough exposure to get it. Wear long sleeves and pants and hats etc. When I swim I wear a full body rash-guard suit and gloves and a cover for my head. I don't let this stop me from swimming either. I just get really odd looks and people ask if the water is cold. I say - no - just glorious. And march myself around proud that I'm still trying to live life - despite my issues.Sue, that was one illness I also questioned. When I was tested for it - not in a flare - so was negative. But, still on a back burner. I had someone else ask about it recently - I guess some are connecting it to people with POTS on a facebook forum. I really don't know that much about it - but a friend just asked about it recently. I guess, I'll be doing some research on this now.Issie Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted May 16, 2012 Report Share Posted May 16, 2012 My mom "blew up" when she was younger and was out in the sun one day. She swelled, got very red and rashy. Her doctor told her she was allergic to the sun. To this day, she can't be in the sun for long without turning red and having problems.I was never this way until last year. I got my first case of sun poisoning, like what you were talking about, Issie. I didn't know what it was and got frantic. Now, I have trouble being in the sun for long. I get red, itchy, blotchy, and then I'll break out in little blisters. I don't know why I've gone into this reaction, but I have. I guess just part of this "thing" I have going on. Sue, I would definitely follow up on that porphyria stuff. I've been tested for it several times, negative all times, and I've never failed a "poor man's urine test" for it. My urine just sits there, not turning anything. That's good. But, with your tests showing change to a tea color, that's definitely something to pursue. This last time I was tested, it was just a few weeks ago, and so I talked with others on a Yahoo porphyria support group who have it, and a lot of the symptoms we all have with mast cell problems can also be caused by porphyria, so yes, definitely worth pursuing. And, since it's so tricky to diagnose, you may want to see if you have a porphyria expert near you, or at the very least, one you can email who will work with you and / or your doctor.Take care, everyone.Lindajoy Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted May 16, 2012 Report Share Posted May 16, 2012 I have sun allergy. My immunologist was very interested in other family members. My son is the reverse of me and gets beet red and swollen when he encounters cold (weather or pools). Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted May 16, 2012 Report Share Posted May 16, 2012 Hey, Rubytuesday, the reaction to the cold is something I'm very familiar with. I've had that since I was little, over 40 years. I get red, itchy, swollen, achy, anxious, you name it, in the cold. Can't handle it at all.But, this sun thing is new to me. I used to worship the sun (not good, I know), but no more.Lindajoy Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted May 17, 2012 Report Share Posted May 17, 2012 MichelleSorry if you've already mentioned this elsewhere, but have you looked into mast cell disease? Heat and skin manifestations following it can be a manifestation. Mastocytosis and MCAS would be important things to exclude, or if they found you were affected, there might be simple treatments that would improve your symptoms.Since being sick with ?MCAS I really can't tolerate much heat or sun at all. I never used to like it, but am much worse now! I also currently have reactions to scents, stress, and some foods. I've had variable POTS and all of my symptoms are extremely variable one month to the nextHope you feel better Quote Link to comment Share on other sites More sharing options...
micheller Posted May 17, 2012 Author Report Share Posted May 17, 2012 I don't think I've been tested for mast cell. Is it a blood test? I used to go tanning but the first few times I would get a prickly rash on my legs that looked like broken blood vessels and felt like someone was poking me with needles. I get a really blotchy, itchy but painful type rash when I go in natural sun. I can't tolerate heat either and I failed the sweat test. Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted May 17, 2012 Report Share Posted May 17, 2012 It's a combo of clinical, labs, and excluding other diseases. Best is to see an allergist familiar with mast cell disease which can be found on the mastocytosis society website. I think the best are in Boston and South Carolina if you can travel.Blood test serum tryptase, plasma heparin. Urine 24 hour N methylhistamine and prostaglandin D2Symptoms include flushing, itching, dermatographism, "allergic reactions," GI upset (including GERD), intolerance to heat, tachycardia etcMany of us with MCAS also have POTS, some of us have all the symptoms but no proven labs but are treated anyway with antihistamines and mast cell stabilizers if they help Quote Link to comment Share on other sites More sharing options...
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