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SUNBURN AND PAINFUL SWOLLEN LEGS was started.
Dr. Rockoff - On the sunburn issue, don't you have to have several "issues" (family history eg.) before one would fear a skin cancer from a sunburn?
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I don't know whether your husband is still taking sulfasalazine, but if he is, he should stop at once.
What you are describing sounds like an allergic reaction to sulfa, not a photosensitive reaction (even if it started after the sun.) Severe drug reactions look like bad sunburns, but cover unexposed parts of the body.
Sulfa drugs are wonderful, but they can sometimes cause severe reactions.
Once a reaction goes away, the skin returns to normal. If stopping the sulfa doesn't or hasn't made the condition better, I think consulting a dermatologist would be in order.
Dr. Rockoff
My husband was taking up to 1500mg of Sulfasalazine a day in an attempt to combat the symptoms of Reiter's Syndrome, an arthritic-type of disease. He was warned that "prolonged or excessive exposure to direct sunlight should be avoided," but what he didn't realize was that even if he had 30 spf lotion on, wore a hat, and was exposed to the sun betw. 8 and 9am, he would become severely burned. A day after his exposure he shook uncontrollably, was vomiting, had a high fever, was delirious at times, and was unable to sleep for two days.
After the initial shock to his system subsided, the reactions to his skin started. He's gone from having red spots all over the exposed areas, to solid masses of reddish purple, blistered, dry, cracking, painful, and itchy skin. His GP prescribed Prednisone to counteract the photoallergic reaction. Unfortunately Prednisone has its own long list of side effects, including swollen legs and feet, sleeplessness, lowering of one's immune system, etc. Warned that he shouldn't be on Prednisone for an extended period of time, his GP lowered his dose after a couple of days.
My husband wasn't comfortable in any position, his skin was on fire. His face, which wasn't initially affected, started getting redder. His nose began to swell and was covered with blisters. The allergic reaction was spreading to areas that were once fine. His dosage of Prednisone was raised again. One day he woke up and his face was so swollen I barely recognized him and he had a temp of 103.5 degrees. A result of the Prednisone (having too much or too little?) or a continuation of the allergic reaction? Who knew. Certainly not his GP. Raise the Prednisone again and taper off more slowly.
Today, nearly four weeks after the first sun exposure, my husband has been off Prednisone for three days. His skin is bright red and in some places dark red. Every once in a while his eyes and around them start swelling. We apply cold compresses. His arms, face, and legs are cracked and peeling constantly. His skin is leathery and deeply wrinkled. One ear is swollen and cracked. He has a low-grade fever and is usually cold even on warm days. He has stabbing pains in his arms and legs. He is unable to concentrate. He spends his time reading if he can, but more often just sitting up on the couch (where he also sleeps), unable to rest in any other position. He takes two to three baths a day in Aveeno or bath oils--these are the only times he's comfortable. The allergic skin reaction is spreading to areas that were never exposed to the sun. He's been unable to go to work or even work at home, he rarely interacts with me or our children, and oh, he can hardly taste food too. I forgot to mention that.
Here are my questions: How do drug companies or doctors get away with "should be avoided"s when selling or prescribing drugs that can have such painful and debilitating affects? Why does his GP treat this as a sunburn that will get better in a week or two when it's spreading to previously unaffected areas (read: his groin, which has not seen sunlight in a very long time) and can't give us any other solution than "moisturize"? Where do I go to get help for my husband? I've tried looking online, but haven't found much long-term help. Do I demand to be referred to a dermatologist? an allergist? an internist? Whose medical domain is this?
I'm pissed off that I can't find help for him, but most of all I'm scared--afraid to lose my husband. No, I don't think this is going to kill him, but feeling so tortured in his own skin has made him feel very depressed and hopeless. I apologize for ranting, but I don't know what to do and hope someone who reads this can give me a clue. I cannot "wait and see what happens in a couple of days" anymore. I'd appreciate any advice. Thanks for reading. laurie
Give the guy a break Truthbeknown...why don't you go to med school and then specialize in your soap box so that you can really help people out. Medicine isn't as easy as you think, and tons of things have to be considered for one individual. Take care
One bad sunburn does not significantly increase the risk of skin cancer, which is what most patients mean by "serious sun damage."
The case you describe is extraordinary. (In 23 years, I've never seen one like it.) My own approach to counseling people is to give them a balanced and realsitic expectation, not to scare them on the basis of extraordinary situations. When you scare people, they just ignore you.
Dr. Rockoff
There's a saying in medicine that if you hear hoofbeats, you should think horses, not zebras. This means that most symptoms mean common diseases, not rare ones.
Itching, swelling, and little bumps are much more oikely to imply eczema or irritation, not erythropoietic protoporphyria.
I'm not sure what you mean by, "photophobia." Do you mean you can't tolerate being outdoors?
Whether it's that bad or not, I advise you to see a dermatologist. Bring photographs if the rash is fluctuating in intensity. The doctor can do porphyrin tests in the (extremely remote) event that he or she thinks EPP is a possibility.
One bad sunburn doesn't permanently damage the skin. Use hydrocortisone to tide you over, and get a definitiev diagnosis so you won't worry every time the sun shines.
Take care.
Dr. Rockoff