Patients Sue Biogen over PML from Tysabri
 

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:eek:
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...

Debbie,

I know someone who is near the end of her 4th year of Ty. And, she is JC positive. Her thinking, and I can't say she is wrong, is that she couldn't function -wasn't at all stable- until she went on Ty.

Her MD is watching her "closely."

Scares the heck out of me but she is OK w it. She can't, she says, go back to how she was. I am surprised that her doc is Ok w it.

ANN

Yep, that's the same for me - JC+, on Tysabri for more than four years now. My neuro doesn't seem especially nervous about it. I do the six month MRI thing.

It has been really good for me - Beta was not good at all in the end, though it worked ok for the first eight years, and I have brain stem, mid and lower spinal cord lesions that affect the left side of my body. To be really honest (and I sound like a doom-sayer) - I think it is only a matter of time before more stuff comes out about the other relatively new oral treatments that are around now.

They are all heavy artillery. My husband is starting to suggest I try maybe going back to one of the Interferons - at least they have a fairly long and proven safety record and don't have the big monsters that others do.

It is largely risk vs. benefits and I think we as consumers of these medications should be aware of and willing to accept the risks if we are going to take them.

Personally death is the least of my worries since getting this horrific diagnosis. :(

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.