I thought this was an interesting post from a member of Braintalk.
I hope it's OK to post it here.
Here's what I learned last Friday from my neuro. Aside from being one of the country's top MS specialists, he's been conducting one of the combination trials and will also be on the panel that unravels exactly what happened and determines the future of Tysabri in April.
In other words, this is reliable and current info directly from one of the top experts.
I apologize if this is a repeat of old info. I haven't had time to really go over the board carefully, and I wanted to get this out there to people who might be anxious.
* YOUR RISKS *
Anyone who has had fewer than say, five, Tysabri infusions should *not* be concerned about PML. (Laurellynne, if you're reading this, I'm thinking especially about you and how distressed you've been. I mentioned your situation to him. I hope this is reassuring.)
If you've had more than that, talk to your doctor. It's almost certainly OK, since PML is so extremely rare, but obviously everyone is being very careful.
* TYSABRI'S FUTURE *
His overwhelming opinion is that Tysabri is doomed, doomed, completely doomed, and will not ever be coming back unless somehow it turns out that there was something rare and completely specific to these two patients that made them contract PML.
Even if it did come back, he would not feel comfortable prescribing it. He'd be calling his patients every three months saying, "Hello. Are you still alive?"
He was so terribly sad and disappointed, for the people who died, for the patients who were full of hope, and for the doctors who wanted to have a good med that could make a difference.
* THE RUMORS *
I brought up the issue of how many deaths, when, and all that sort of thing. Told him about the flying rumors about anaphylactic deaths in November. He was quite amused.
Guess what? There have been many, many deaths in the Tysabri trials. Things like bike accidents and sepsis and suicide. Things that clearly have *nothing* at all to do with Tysabri. Things that are definitely *not* anaphlyactic shock.
Because yes, the doctors and the drug companies are indeed legally bound to report those. They have to report *every* death. And anything that could be related to Tysabri *has* to be recorded as such.
So, no mysterious insider knowledge to be substantiated later. The rumors remain rumors. That's all they ever were.
Oh, I didn't ask about financial rumors. But I *did* ask if he thought there was any chance this could be pharmaceutical foul play. He didn't.
OK, here's my last point: One of the big problems I have with many MS meds is that they focus on immunosuppression. I am going to put in a plug for IVIg, which does the opposite. I have been on IVIg for roughly two years, and I think it is a *miracle* drug.
If any of you feel like you're running out of options, talk to your doctor about IVIg. Many neuros in this country are not familiar with it since it's fairly new here, so they may not think of it, but if you can get insurance coverage it can be amazing stuff.
See if you can try IVIg before moving to Novantrone, or after your Novantrone runs out, or while you're waiting for Aimspro (baaaaaaah).
All right, be careful out there.