SJS Caused Intense Pain and Loss of Vision

Lafayette, LARonald's rheumatologist prescribed him sulfasalazine to help control the inflammation and pain of rheumatoid arthritis but three weeks after he started the treatment, Ronald came down with flu-like symptoms, which led to full-blown Stevens Johnson Syndrome (SJS). At the time, neither Ronald nor his doctor knew of the association between SJS and sulfa-based antibiotics. And SJS has also been associated with many other drugs, including Bextra, Children's Motrin, Advil/Ibuprofen and more.

"I took this sulfa drug because I was reluctant to try the more treacherous drugs," says Ronald. As it turned out, the drug he thought safe almost cost Ronald his life; to this day he has permanent damage, including loss of vision. Stevens Johnson Syndrome can be life-threatening.

"I had this dry, hacking cough, nasal congestion and my throat was very tender and sore," says Ronald. "Then my eyes became dry and red but I still didn't pay much attention." Like many SJS victims, Ronald kept taking his meds, the worst thing he could have done.

"The next day I went to the doctor— I had eaten raw oysters a week before so he thought I had a bacterial infection in my eye—it felt like I had sand in them. He also thought I had conjunctivitis and a sinus infection so he gave me a cortisone shot and a prescription for the congestion. He also noticed lesions on one side of my face—that was the beginning of the SJS rash.

The next evening my wife took me to the hospital; my throat was on fire and I thought it was going to close so I wouldn't be able to breathe. I was scared. And I was starting to get severe sensitivity to light. The ER doctor didn't know what was wrong initially; They told me to stop taking all my meds and hooked me up to an IV with a mass of steroids and morphine. The rash was coming into full bloom: it was soon on my chest, upper arms, neck, face, ears and even into my hairline. It was in my ear canal, throat, nasal passages and esophagus—right into my stomach.

I spent a week in hospital. On the third day I was diagnosed with SJS by a gastroenterologist--the doctors previously just said it was just a 'reaction'. SJS is an allergic reaction, but it is a delayed reaction which makes it worse because your body takes longer to get rid of the offending medication.

Then the rash turned into blisters, even in my eyes and eyelids. It was extremely painful; eye drops gave very little relief and that was all they could do. Several lesions on my left eye scarred my cornea and they sewed my eye closed—I was not awake for it. They opened it 3 weeks later and closed it again—I was awake that time. My left eye is likely permanently damaged and all I can hope for is a cornea transplant. And it destroyed my tear glands.

When I found out about SJS I was bewildered. My family did a lot of research online and explained to me what it is. Apparently it takes a series of factors for SJS to occur: you have to have one of the potential SJS-causing drugs and a few triggers, which could be as simple as a cold or sinus infection (which I had), exposure to measles or mumps, or a hidden cancer or carcinoma of some sort—there are no hard and fast rules. I also found out that many over-the-counter drugs can cause SJS, including Non Steroidal Anti-Inflammatory Drugs (NSAID's), Advil, Motrin and Ibuprofen.

According to some reports, it is rare for SJS to occur more than once and that it only happens to about 300 people per year nation-wide. And I am terrified of taking any other meds, only those prescribed by my ophthalmologist. I got SJS in February of 2008 and I still don't feel well. I am blind in my left eye and my right eye vision is lousy; sometimes I can't see anything. I can read for a short time with my glasses but I avoid reading because it is so frustrating. I can't even focus on TV; I don't know if my vision will ever improve."

Stevens Johnson Syndrome is often misdiagnosed so those numbers of SJS victims Ronald quoted are probably higher. LawyersandSettlements alone has interviewed dozens of people who have developed SJS (or their child suffered the agony of SJS) from one of the drugs mentioned above.