Tysabri still down for the count

by Michael S. Kaplan, published on 2005/08/09 15:59 -04:00, original URI: http://blogs.msdn.com/b/michkap/archive/2005/08/09/449590.aspx

Some of you may recall my post about how the new MS drug Tysabri took my breath away with two reports of Progressive Multifocal Leukoencephalopathy (PML), a rare but usually fatal disease of the central nervous system. Since that time there has been in additional case which was originally believed to have been due to a tumor but in the later review was found to be a third case of PML.

If you go to the Tysabri web site, you can see the letters that have been sent to healthcare professionals over the last few months. Now I don't know about you but they don't really inspire a ton of confidence for me.

I talked to my neurologist the other day, and she mentioned to me that there are a lot of people who had really been counting on this drug in we the changing the way MS would work for them. I had to admit to her that I guess in a way I was one of them. In any case, that's when the whole Novantrone thing came up. Fewer options, etc....

I've really been thinking carefully about the idea of taking the drug, and in the end I think I'll end up taking it if I qualify. Multiple sclerosis isn't a death sentence, but it is a life sentence. If I can't trust my neurologist, then frankly I need to find a neurologist.

It is unclear what will happen with Tysabri. If they cannot isolate the exact circumstances that can cause a drug that is otherwise wonderfully tolerated to occasionally kill people, then it doesn't sound like that drug is going to be available....

... and the problem is regulation.

It should be up to the consumer to decide whether the risks involved in taking the drug outweigh the benefits - not some faceless bureaucrat in Washington (or Wellington, if you're in N.Z.).

Of course, that would actually involve the Government trusting people to run their own lives ...

I was actually in the study for Tysabri for 2 years and was getting the drug along with Avonex. Please know that I know that I along with others were lied to during the study. I wouldn't trust this drug at all! I was sick for over 6 months straight and was told it had nothing to do with the drug only to find out it had everything to do with the drug and could have been killing me. It is easy to say that it is up to individuals to determine whether or not they want the drug, but if the drug companies aren't providing us with correct information, how can we really make that decision? After the drug was pulled we were all put through the ringer and the study gave us NO information, just what we found on-line. They took their information and did what they wanted with us, but never listened to what we had to say and whenever it was something against the drug, we were told not to worry about it.

Hi jaderay,

yes, it looks like what has been going on here has a lot less to do with medicine than it has to do with drug company shenanigans. I'm sorry you were caught in the middle because it really sucks to ever be put in that situation....

I think Tysabri is dangerous stuff and taking it is like playing Russian Roulette. No one even knows the long-term effects of this drug, but I bet there will be more incidences of PML, etc. I had it once before it was taken off the market, and twice after it came back. In June 2008, I developed abdominal pain of unknown etiology for which I had to be taken to the ER by ambulance; in July 2008, I had an anaphylactic reaction immediately after beginning the IV, with the same abdominal pain, facial swelling, dyspnea & chest tightness. No fun! I am fortunate in that my MS is fairly benign at this time, so I don't need to be on any drug that makes me feel worse than I do without. My neuro seems to think I will continue to develop lesions and then I will become disabled. Whatever. Truth is she can't predict the future any better than the next guy. She even said I could try Tysabri once again if I had Benadryl IV before the Tysabri. No Thanks! Sounds like asking for trouble after having had an allergic reaction.