report out on March 18th said 7 more cases of PML have been identified bringing the total to 102. Of one of those cases, one was a death bringing the total deaths to 21.

http://www.msrc.co.uk/index.cfm/fuse...ow/pageid/1905

It seems like the longer you are on Tysabri, the scarier it gets.

Nope, it starts off scary, and stays that way. At least that is my experience. I go in Monday for yet another game of russian roulette.

They used to openly report all these things, and you could easily track your risk vs the benefit for yourself. now they hide it, and you have to really work hard to find the reports so that you can judge for yourself. Yes, the media can blow things out of control, but when its YOU taking this med I think you have the right to know all sides of the debate before you sit in that chair each month. I guess big pharma thinks that if you dont hear about it, you will assume it went away.

Ok so according to the information in that link it is 1.23% out of 1000. That is around the predicted death rate. I guess we need to decide if it is worth the risk to us if we are taking Tysabri. If it worked well for me I might take that risk?

If I were worse off than I am, or fading fast, I may consider this medicine, but I feel its really severe, and has many risks involved, up to and including death. Copaxone has many risks and side effects as well as the other DMDs, but death isnt usually one of the effects.

As my MS MD said its 1 in 100 for the public, but if YOU are the one that gets it, its 1 in 1. everyone else wont matter. When I first starting seeing them they wouldnt even talk about TY with you. Said it was too dangerous, too unpredicable, and so forth. Then a new MD came into the nest and all of a sudden TY was on the menu. They are reccomending it for those who have failed off 2 DMDs or continue to progress on DMDs. How can they be against it one minute, and cheerleading for it the next? that confused me.

The PML risk rate for 2-3 year users is 2.41/1000. After that there isn't enough data available to establish an accurate risk level.

As always, the final decision whether to use Tysabri should come from the patient after becoming as well informed as possible.

Harry