Per the news item in this link, the number of PML cases has risen dramatically from 13 about a month ago to 23 today. Hmmmm....

Harry

http://www.xconomy.com/boston/2009/1...-drug-holiday/

Wow, a bit scary but the risk hasn't changed....still about 1 in a 1,000.

Still too risky for me.

Are these people dying or are they catching it in time?

Sally,

I'm not a statistician but read that the risk of PML goes up a large degree for people who have had more than 24 infusions...about 1/640. Not sure what these additional cases would do to that number but you know it would increase the potential a lot.

Don't know if these people are dying but did read something a month ago that even if you don't die from PML, the residual effects in most cases leave the patient in poor shape.

And isn't it sad that we always seem to hear this information from the business world and not from medical resources.

Harry

The 23 cases of PML was identified by the EMEA in their monthly meeting minutes. The EMEA is the European equivalent of the FDA.

The financial press is doing MS patients no favours as they tend to sentionalize the news rather than giving it detailed research and balanced reporting.

As far as outcomes from the PML infections, I do believe the outcomes have been better than expected but they still run the gamut from death/severe disability to only minor remnant effects. We haven't seen much info from the more recent April 09 to present cases which may be a better indicator of outcomes (been looking for PML more vigorously).

Chris

Wow that totally kills my thrill of opening the surprise box containing the fleece blanket and tote bag that Biogen Idec sent me with copy number 3 of the drug info.

They must be getting short on money. I got tickets to the opera and a weekend in Vegas with all meals paid.

Just kidding Legzz. It's still less than 1 in 1000 for risk of PML according to the person I spoke to on Wednesday morning at Biogen.

I told him (George) that I had lots of friends taking Tysabri, and that we had known each other for years, and that I wanted to get an update on the latest info. He put me on hold for several minutes to make sure he gave me the correct info, lol. I told him that I might consider taking a break for 5-6 months if data showed any evidence that it would benefit me. He concurred with my MS neuro that there is no known benefit of doing this.

Anyway, I think you're doing the right thing in trying Tysabri. You're young and the other meds haven't helped much. If T helps, it will be so awesome.

I hate to say this but the financial press really doesn't give two hoots about the health or well-being of MS patients. Their only reason for reporting this information is about how it will effect Biogen's stock prices and what ramifications that means to the world of business. Detailed research and balanced reporting means nothing to them in this situation.

Harry

Hi Wiz,

Do you really think that anyone from Biogen would admit if the risk of PML would change from 1/1000? With these extra cases showing up in a very short period of time, one would have to think that the risk factor would have to be higher than what it was a month ago. At the same time, tabulating risk factors is quite complex and nobody might actually know what the true numbers are at this time.

Harry

I got a "new patients" kit with a letter saying my MD said he was asking me to consider Tysabri, and they wanted me to know more about it. I got a DVD/VHS tape and a booklet. Loads of smiling shiney faced folks in the brochures talking about how wonderful their life is now. They ID the PML risk as 1 in 1000.

I have been complaining that I want to stop C and my MD told me I could go to A or T and and said I would stick with C a while longer. It seems that T is now recruiting me!

Suggest all the Tysabri patients contact MS ActiveSource on Monday and state that we will take no more infusions of Tysabri until they provide us more info on PML cases.