From today's Boston Globe:

http://www.bostonglobe.com/business/...QoK/story.html

ANN

PML is a bigger fear for me than even MS. That's why I won't take the DMD's offered to MS patients. I guess I'm choosing what I consider the lesser of two evils even though I consider MS a pretty big evil.

Kitty,

I agree w you. I am more afraid of PML than worsening MS. I hope I don't have to choose.

I know Rituxan and Tysabri (both monoclonal antibodies) can cause PML. It hasn't occurred w the original DMD's: Avonex, Betaseron, Copaxone or Rebif.

ANN

I hope they win their suits. IMO, they should and the families who
lost their loved ones to PML due to TY, as well!!!

I hope some day they either find a vaccine for this virus or a cure for PML that leaves no damage. That way people can benefit from the drug without living in constant fear. The anxiety I suffered before I knew I was JC virus negative was absolutely awful.

I firmly believe that people have the right to take what ever they want to but they must be ADEQUATELY informed about all risks.

Now that people know if they are positive or negative they can make better decisions (not perfect ones) but given the rising number of cases you would think Biogen/doctors would not allow positive JC virus people to take the drug at all. But we know they love the $$$.

Those are absolutely heartbreaking stories.

I know a woman who has been on Ty for more than 3 yrs
She knows the inherent risks, but feels so much better on it that she'd rather take the risk than deteriorate, which was occuring before taking Ty.

I'm worried about all of these new immunosuppressants. IMO it's playing with fire...

Sounds like myself, where Ty is concerned. Another, deciding factor for me, was reading about the rebound effect of coming off Ty. I didn't like the fact that studies, at least when I was making my decision, didn't go past two years. I don't like the idea of spending half the day, at the hospital to take the infusion.

I'll take my chances, considering how many years in remission, compared to how many weeks of flare ups, I've had, in 13 years time.

Thanks for sharing this article.

The woman I know is also JC+...the MS center she goes to is infamous for pushing Tysabri-I know several people who go there, and they're all on it. A neighbor, who was recently dxd, is also on it and is also J+. I couldn't believe my ears...

IMHO no DMD is 100% safe. I was on Copaxone, and I look like the moon with so many craters. So it's a question of quality of life...you take your chances, hold your nose and jump in...

Sounds like a frivolous lawsuit. Or they should be suing their doctor for prescribing a medication when s/he did not take advantage of the very available info. WE all knew about it. There's no excuse for a doctor not to. I believe by the time the people in the story filed their lawsuit, Tysabri had already been taken off the market and put back on. That info was not hidden from anyone.

Well, I certainly could never say that I am not informed - and for those who aren't - why not? The information is out there. I don't believe there has been any conspiracy of silence about this.