This Is MS Multiple Sclerosis Knowledge & Support Community

so 1 in every 568 patients on Tysabri (for 2 years or more) get PML ?

hwebb wrote:so 1 in every 568 patients on Tysabri (for 2 years or more) get PML ?

So the risk has almost doubled from the original 1/1000 number that Biogen told us!! I'm sure new Tysabri patients have a lot of thinking to do.

Harry

I agree, the risk is growing.

if i recall correctly, the manufacturer originally estimated the risk as 1/10,000

now, i dont mean to be harping on this.....but the risk of suffering an adverse event after undergoing ANY ccsvi procedure (including balloon angioplasty, or stent placement...in any country of the world by any practicioner) is currently around 2 in 1000 also. Remember, in one instance a stent migrated. In another instance, a person had a fatal reaction to a blood thinner used post-treatment.

However...with CCSVI the risk is not of dveloping brain cancer. With CCSVI the risk is likely to decrease with time, as treating doctors learn more about the procedure, diagnostics improve, etc. With Tysabri...the risk increases with time. The longer you're on it, the more risk you're exposed to.

Hi hwebb,
I have heard from several people that personally knew the lady who passed. They say that her family made a public statement that she did not die as a result of the surgery, but of the same condition that her mom had. However, even if we did count her situation and the other one, the odds would be more like 1/1,000. I have heard that around 2,000 liberation procedures have been done at this point. As for angioplasty, no significant risks have been reported at all.

I am agreeing with you 100% that this is WAY more safe than Tysabri. I am also agreeing that it will get even more safe with time, while Tysabri gets unsafe with time. I would much rather fix a physical vein issue than I would deplete my own immune system with Tysabri.

you're preaching to the converted

There are risks associated with a ccsvi procedure. I weighed up those risks, and had one procedure. It was regarded as a failed procedure (vein restonosed, and I relapsed)...but I'm lining up a second time (booked for June 30th). Time has passed...3 months, local analytics have improved (another stenosis found)....my doctor has more experience....I think the second procedure will be more successful than the first.

Hi hwebb,
I figured you were convinced by your messages and your profile picture. I am looking for a place to get treated myself. Hope all goes well for you the second time around. CCSVI totally makes sense.