Raptiva Cause for Concern

Memphis, TNGloria was prescribed Raptiva for severe psoriasis and she says it worked "like a charm". She stayed on it for about 4 years, until she developed troubling side effects. Gloria has been a registered nurse for over 30 years—right away she thought these symptoms were associated with Raptiva.

She started having muscle aches and back pains and injections site pains. "Usually the injection burns but it should go away," says Gloria. "It was more than a tad uncomfortable—sometimes the burn stayed for days…

"Then I started having some neurological issues and I even had to use a walker for a while. I didn't know anything adverse about this drug until a few weeks ago. I received a call from a dermatologist telling me I should be taken off Raptiva; he went to a conference and they mentioned this severe neurological defect—a brain damage disease [progressive multifocal leukoencephalopathy (PML)]—associated with Raptiva, and once you get this you won't go anywhere with it but down.

I got sick to my stomach, especially because I have been taking it for so long. When my doctor first told me, I was in shock, strictly because I am in the medical profession. What if my brain has some of this disease process going on and they aren't catching it? Then a few days later I got mad. I can't be mad at my doctor because every drug has side effects and you never know when a side effect will crop up and grab you. I got angry at the drug company because they knew this was happening. I am a research person and if I take a medication, I need to know what it is going to do and if it has any adverse affects.

From what I have read and from what the pharmacist in my company told me, the drug company knew about this side effect from clinical trials overseas and those trials did not have good results. This made me really angry. Apparently the drug company knew of the negative trials but never imparted the information here in the US.

I researched this drug thoroughly when I was first prescribed it and there was nothing in the literature that jumped out at me and said 'Don't take this'.

I didn't know if the neurological problems I was having were due to Raptiva or not because nobody could give me a definitive answer to my question—where were these problems coming from? I have never had issues like this in all my life. I was even hospitalized for 5 days. I just came home this week but I am still having residual affects from the disease process that put me in the hospital. I had a severe rash, fatigue, joint and muscle pain—all the classic symptoms.

The doctors couldn't say that Raptiva was the direct cause, but they didn't rule it out either.

I've been off the drug for about 4 weeks, but it takes a long time to flush Raptiva from your body to feel any changes. Right now I feel tired; I am worried about any residual affect and I am scared to take anything else for psoriasis ( I have been through the whole gamut—creams and oils—but nothing works.) My doctor prescribed another injection medication and I was very leery of taking it--he understood that I was gun-shy about this stuff.

My life has been turned upside down because of this. I was able to take any medication before Raptiva and not worry about it but now I am skittish about anything, even my old medications. I am mainly concerned about which pharmaceutical company makes them—if it is made by the same company that makes Raptiva, I won't take it.

I'm also a very strong and analytical person but this has me acting like a 2-year-old, being scared of any medication. I want to be confident like I was before, and not sit here waiting for something bad to happen. And the amount of money I have spent – Rapitva doesn't come cheap—has me angry.

Even without a lawsuit, I would like the drug company to make available the research done in other countries so people can make an informed decision. And I don't like being blindsided by this incident—it has affected my whole family. They are nervous; they have seen me sick and don't think it is right. I just hope my testimony can help others."