Of course I'm compelled to make a few comments.
Better--sorry about that, since the info was in a section "My Take", I thought it might be you offering info.
Ian, Ronnie, Amelia and all who are anxious to have an infusion--
Yes, I think people are aware of the risks (more or less) but are they aware of the benefits, and, what exactly are those? I'm an avid proponent of
"informed consent" and abhor misleading information. I think the decision to start Tysabri should be one that weighs the risks
and the potential benefits.
As ironic as it might sound, I actually think the "anecdotal" stories of people on Tysabri with seemingly excellent recoveries with one or two infusions is hopeful for people with MS. To me, these reports seemingly suggest that perhaps the "disability" one experiences is the result of the inflammation itself (edema, etc.) and,
that inflammation , so far, in those individuals, while indeed severely disabling, did not result in permanent damage to neurons, axons, etc. If there had in fact been permanent damage, I don't think people would be reporting their recovery. To say it another way, these anecdotal reports suggest people indeed experienced significant disability for long periods of time, but did not experience permanent damage. I find
that very hopeful for everyone with MS.
Arron and Harry--about that "42% reduction in the risk of disability progression in two years".
After two years, 17% of Tysabri patients had seen their MS progress, compared to 29% of placebo patients.
I understand that to say as well that
almost 3/4ths of the people on placebo did not have any disability progression in two years. To be exact, 71% of the people on placebo did not have disability progression in two years; 83% of the people on Tysabri did not have disability progression.
Just to try and keep everyone up to speed, here's a link to the
letter Biogen sent to the docs today.
I wish everyone who takes Tysabri the best of health and recovery and I am thankful that so far I'm not in a position to have to make a decision about this.
Take care all
Sharon