San Diego, CAEdu always took Advil when he got a headache, but not anymore. One night about two years he took a few Ibuprofen (in the form of Advil) and went to bed. "I woke up a few hours later with an itchy face and scalp," says Edu. "I looked in the mirror and saw big red welts over my face and throat and my scalp felt lumpy." Fortunately, he made it to a hospital in the nick of time: Edu never thought an itchy scalp and a few headache pills could lead to SJS Ibuprofen.
"When I saw these welts it really scared me so I woke up my wife," says Edu. "She took one look at me and said, 'You need to get to ER right away.' It was a 20-minute drive to the hospital and as we were driving I started to have a hard time breathing.
"By the time we got to the hospital my breathing had become very labored. They took me into a room right away and next thing I knew, it was the next morning and my wife was by my bedside. Sure enough it was morning, but two days later! I don't remember anything. I went into ER Wednesday evening and woke up late Friday morning. I tried to get up and couldn't figure out why I couldn't move. My limbs were tied down and my wife was sitting by my bedside. She was frantic.
My wife explained to me that my throat had become so constricted I couldn't breathe anymore. The doctor was trying to put a tube down my throat but it was so bad that he couldn't find one small enough to fit--he kept trying smaller tubes. 'I have one small tube left and if we can't fit this one, he will have to get a tracheotomy [ a surgical procedure on the neck to open a direct airway through an incision to the windpipe],' he told my wife. Luckily a tube fit but they fastened my arms and legs to the bed—I was in an induced coma and apparently I was trying to get the tube out.
The doctor came in and talked to me, asked me if I had taken Advil before. (My wife told him what happened.) I told him that I frequently took Advil but every time I took it, my scalp would itch. I'm a surfer and I just thought I had salt in my scalp. As soon as I mentioned my itchy scalp, he knew I'd had an allergic reaction to Ibuprofen. 'This allergic reaction gets progressively worse to the point that you could develop a breathing problem and angiodema [a swelling in the deep layers of skin] and possibly SJS,' he told me."
SJS, or Stevens Johnson Syndrome, can be lethal. It usually starts with a skin irritation such as a rash or in Edu's case, welts. Luckily, when Edu woke from his coma, the welts and swelling were gone. " I was very tired and that's about all that I can remember," he says. "They told me to never take Ibuprofen again and they gave me epinephrine injectors in case I accidentally take Ibuprofen or anything else that will result in this reaction. I have to keep this kit close by for the rest of my life--I keep it in my travel bag.
The doctor told me that with this type of allergy gets progressively worse to the point that I could have died. I think it is criminal—somebody at Advil HQ must have known of these potentially lethal side effects and the public should have been notified. They should list symptoms such as 'itchy scalp' and if these symptoms occur at any time, to see your doctor immediately.
If this happened on one of my surfing trips in Mexico (where I go a lot ) I would be dead. And I used to take Advil with me all the time. It is pretty scary to realize that I came that close to death.
All my kids came to visit when I was in hospital; they were afraid of losing me. I don't know why I am allergic to this med but now I have a long list of drugs I shouldn't take; I have to be very careful. But I also feel lucky—I have a lot of life left in me and I'm looking forward to retirement. But I came that close…"
Edu agrees with the SJS Foundation: the "Allergy alert" for products containing Ibuprofen should be revised to include a warning for aspirin-sensitive individuals and drugs such as Advil should contain a description of early symptoms associated with Stevens-Johnson Syndrome (SJS).
Children's Ibuprofen products have been in the news lately and a lawsuit was filed against the manufacturer of children's Motrin. On its website, the SJS Foundation says it has written to the FDA about Stevens Johnson Syndrome and children's ibuprofen products for over a year, and there have been "more reported cases of SJS to ibuprofen then to acetaminophen." Children or adults taking Ibuprofen (such as Advil, Motrin, Nuprin and Medipren) can become overwhelmed with Stevens Johnson Syndrome. If they continue taking the medication (because they do not know that the drug is causing the problem) then SJS can develop into the more severe form of the disease known as toxic epidermal necrolysis (TEN).
The mortality rate of TEN is close to 40 percent. As Edu says, he is fortunate; perhaps the next person who develops SJS Ibuprofen won't be so lucky.