Concerns after Raptiva Withdrawal

McComb Township, MIWithdrawing Raptiva from the market due to the possible risk of developing progressive multifocal leukoencephalopathy (PML) has left many psoriasis sufferers anxious and concerned. Some users of this psoriasis drug have been taking it for several years and are just now finding out that they might be at risk. Scott F. has unexplainable symptoms and he wonders if they are Raptiva side effects. "When I read about this brain disease it really scared me," says Scott.

PML leads to a gradual worsening in the way the nervous system works, which cannot be reversed, and death. People who have taken Raptiva and have severely weakened immune systems are most at risk. Longer, continuous use may further increase the risk. Scott was prescribed Raptiva 3 years ago for psoriasis but only took it for 6 months—he wound up in hospital and his doctor told him to discontinue the drug.

"First I got really sick with the flu and my doctor told me to quit taking it," says Scott. "Right after I quit taking Raptiva, I had an allergic reaction—my skin was burning from head to toe. I was rushed to hospital and given morphine by IV because the pain was terrible. My skin was on fire; my mother said it looked like I was dipped in the Burger King deep fryer.

I lost the use of my legs for close to a week—that was scary. Then they got worried about me becoming addicted on morphine. I spent 3 months in hospital and I had never spent a day in hospital before that, except when I was born. During those 3 months I was so messed up I barely knew what was going on.

The dermatologist who treated me said I was lucky to be alive. This happened right after taking Raptiva--very coincidental. I know these symptoms are not the same as PML but doctors at the hospital told me that this happened because it was a bad medicine and once you stop it cold turkey you can get this reaction. I had more issues after that.

Shortly after I got back home, I tore my Achilles tendon and my doctor wonders if it is linked to Raptiva. And I have knee problems. No one yet knows if this is linked to Raptiva or not but I get skin infections—small blisters all over my body--frequently, which I never had before.

And I forget a lot [Scott called back after being interviewed and remembered to mention this]. My memory is done since I got out of hospital. It is very frustrating and I repeat myself a lot, many people have told me. I believe it is all from this Raptiva."

Scott's symptoms aren't unique. The following message from MZ in Arizona was posted on the National Psoriasis Foundation website :

"My mother had psoriasis and was on Raptiva. While on it, she developed body aches all over and after some months, had a massive flare up that was life threatening. It turned into erthyrodermic psoriasis that has lasted for more than one month. She had a fever of 104 for over ten days together with chills, shivers and excrutiating pain and burning all over her body. Her ankles swelled up to the point that she couldn't walk and now her body is sloughing completely...

We called [Genentech Inc., the manufacturer of the psoriasis drug] but they were not very responsive… I have seen many other posts with horrific Raptiva side effects. We want to hold Genentec [sic] responsible for this drug and prevent others from having to similarly suffer."