Stevens Johnson Syndrome Victim Can't Even Take Ibuprofen

February 8, 2010, 8:00AM. By Jane Mundy

Nashua, NH"My nightmare with Stevens Johnson Syndrome began 15 years ago," says Darlene, who has a complex pain syndrome but can't take any meds—not even Ibuprofen—to relieve the pain. "After all these years, my doctors have suggested that so many of my problems stem from allergies to drugs and if I take anything at all, I will get another SJS episode."

SJS is a very serious condition that almost always requires immediate medical attention and hospitalization. Darlene has been lucky enough to avoid hospitalization so far, but her primary care physician and hematologist both believe she has SJS.

"I have blistering in my mouth, throat and sinuses and I have internal bleeding," says Darlene. "I've been on so many meds over the last 15 years and have had bad reactions to just about every one. I was diagnosed with RSD, which is reflex sympathetic nerve dystrophy, and it's very painful. I took Ibuprofen to relieve the pain somewhat, but that caused my first allergic reaction.

"I went to the Mayo clinic to treat these symptoms; not one doctor connected my allergies to the medications I was taking. They had a complete list of all my allergies, but I have never been sent to an allergist. I even had SJS symptoms when I was at the clinic. They noted it—I have the report.

"My doctors here in New Hampshire have finally mentioned SJS. The last time I had a severe rash, my primary care doctor said, 'It looks like SJS to me,' but he couldn't be sure. He sent me to a hematologist, who took my symptoms into consideration and took me off all medications, including Ibuprofen.

"The same day I saw the hematologist, I went to an allergist. I gave him a list of my allergies and meds and my symptoms. He put his hands up in the air and said, 'You're beyond my expertise and I suggest you go to Bartmouth Hospital.' This is a medical college that does research and they have an allergy center, but my appointment isn't until March 12.

"Because I can't take any meds, I am in a lot of pain. Right now I'm bleeding internally—I've been to the ER twice in the past few days and they are trying to get me scheduled for an upper and lower GI test to determine how much damage has been done.

"I have another appointment with my doctor tomorrow morning and he is supposed to give me a medication to clear out my system so they can do the upper and lower GI test but I'm not sure that I can even take this medication.

"It kind of sucks being me."