alexisss wrote:He said that this was quite dangerous because there is a theoretical possibility that the immune system could not only begin attacking the myelin reactive t-cells but could also start attacking other t-cells.
Take a look at http://www.tv.wallst.net/r/3-minute-pre ... an/113/537
for a short interview with David McWilliams about previously reported Tovaxin data. In this little interview he specifically addresses the safety issues that have been observed with Tovaxin. Lot's of things are theoretically possible but the real story will be borne out in the actual use. So far the results show no safety issues have arisen.
I've kept an eye on this thread for awhile and decided it was time for me to weigh in with my jaundiced eye and typical cynicism.
A relationship with a neuro is a special thing, certainly. As patients, we have a lot of responsibility and need to keep cool at all times.
But neuros have a responsibility, too. My experience with Fired Neuro # 1 rings a few bells when I read this case.
When I was first diagnosed, I did a lot of research about treatment options and made the old Avonex decision before I even stepped foot in the neuro's office. This guy wouldn't hear of it; no, no, no, he prescribed Beta Seron for ALL his patients and there was absolutely no negotiation. Fired him. And found out later he had a great financial interest in Beta. Hmmmm...
Neuro # 2 was fine with Avonex--this was a great guy and we worked well together until he left the area. WAAH!
About this time, I started getting info on Tysabri and his replacement and I agreed that as soon as it met FDA approval, I'd be on board. Well, we know how that got delayed! Grrrr. And I was only 24 hours away from the first infusion when THAT happened!
Between this area being seemingly unable to keep great doctors AND my problem with firing others for mischiefs great and small, I tend to have quite a list of past docs!
So, a couple of neuros later, it looked like Tysabri was coming back.
Then THAT neuro decided that no, no, no, she wouldn't prescribe Ty under any circumstances. All those PML horror stories PLUS new ones, too. She could definitely have a second career writing B-movie scripts.
So I fired her and spent some time in limbo, doing that "finding a new neuro agreeable to Tysabri AND jumping the insurance hoops."
Then I found Tim's website. And the rest is history.
But while I was jumping the hoops to qualify for this trial, I learned that LAST neuro was a primary researcher on oral interferons. So no wonder she was such a nay-sayer about Tysabri!
Moral of this rant: when you've done tons of research on a therapy and you get hit with a neuro telling you a horror story, you might want to investigate a money trail.
Yip, I'm a jaundiced cynic. No doubt.
I truly believe Tysabri would be dominating the APPROVED therapy market right now if patients had the truth about that PML mess. Let's face it--a lot of people (neuros with vested interests) would lose their shirts if demand for the CRABs suddenly evaporated.
And once our stuff gets the FDA nod, I expect Tysabri to fall off the radar, too.
And to paraphrase Sherlock Holmes, when something fails the logic test, the illogical, no matter how shocking, must be considered.
So when a neuro paints you a scary picture of Tovaxin--when WE logically know there are no reasons for going into pre-hysterical mode--the reason canNOT be a medical one.
As these CitiBank ads say, "What's in his wallet?
I'll get off my soapbox now...