More on France, this article is from 2007 when Tysabri was approved in France. They have been infusing since a week before this article was published:
http://www.apmhealtheurope.com/story...46&numero=6296
"...Asked by APM about rapidly evolving MS, Prof de Seze explained that natalizumab can be administered after mitoxantrone, which is limited to six infusions due to toxic haematological effects, but that there must be a time lapse between the two to allow the immune system to recover. He considers it preferable to offer a different immunomodulator after mitoxantrone, or natalizumab before mitoxantrone.
In France, natalizumab can only be prescribed by hospital neurologists. Certain precautions have to be taken before treatment initiation, mostly due to the risk of PML. A brain MRI must have been carried out less than three months previously and neurologists must check for immunosuppression and latent tuberculosis. If previous immunosuppressive treatment has been used, there is a six-month delay before Tysabri treatment can be started, to give the immune system time to recover."
I don't know how many people in France are on Tysabri. They don't seem to be having any of the problems that Germany is having or we would be hearing about it.The patients first infused in France are about where Wiz and I are right now and so far, no PML reported there from any of the information I can find.
The German patients do NOT seem to be having a lengthy washout from mitoxantrone, they do NOT seem to have the monitoring that we have and that France has, and for two countries who started infusing around the same time, the discrepancy in PML cases is outstanding between France and Germany.
As far as the CD4/CD8 testing, it's possible that you get tested as a part of your bloodwork. Ask your neuro exactly what he/she tests for when they do bloodwork as a part of their monitoring.
The Tysabri rate is 60%US/40%ROW as Natalie stated. The figure of 64K is also correct +-. This figure is all patients who have been exposed to Tysabri, including trial patients and people who have discontinued Tysabri. I believe the 45K+- figure is people who are on Tysabri post market retail (since 2006 return to market) and does NOT include trial patients who are in STRATA, TYGRIS, etc. so that is where the discrepancy in the numbers comes from.
My news:
I received a second call from Biogen yesterday. We ARE having an effect. They are being swamped by calls, our points are being presented clearly and the top brass is getting the messages and is listening to the monitored and taped calls.
When asked how long would be too long for them to make a decision as to how to get the information out to patients, I said that people are already speaking with news agencies, calling senators and that suggestions have been made as to more direct protests, including refusing one infusion in one month across the board if need be, but that they do have some time but that shouldn't be construed as more than two to three months.
I reminded him that we as patients are the best advocates for other patients, that Tysabri is a patient driven drug, but that none of us are feeling comfortable right now with what we can tell new people who ask us about our Tysabri experience and that replies are starting to include the fact that we as patients who have been on Tysabri for a long period are being held back by not receiving information about the new cases of PML announced by the EMEA and the FDA, and no word from Biogen and Elan, that our physicians are busy and don't have time to do Biogen's job, that it costs many patients money to see their physician, even if just to ask questions and be given up to date information. I also spoke about the fact that we get faster and more information from financial news agencies than we get from Biogen. I reiterated the fact that we are not asking for names or for people's privacy to be violated, but that we do want country, age, sex, length of time on Tysabri, previous treatments taken, length of washout time, and updates on condition and followups.
I also reminded him that if it wasn't for patients in 2006 at the FDA hearings and working in the background, that Tysabri more than likely wouldn't be on the market right now, and that we did that with little help from Biogen and that with the internet, patients around the world are communicating about this problem and working together to change it.
I'm urging people to continue to call, write letters to any addresses you have for Biogen and Elan, including investor relations, and speak with other Tysabri patients you know, whether they are using the same neuro, infusion center, people you know on Tysabri that you speak with on the net, go to other boards that you know of and get the word out. When speaking to someone personally at Biogen or Elan, please be as polite and professional as possible, state the facts, try to get names, call back numbers and email addresses and share them privately since most emails are not public and we want them on our side in a positive way.
We ARE making a difference here but they need to keep hearing what we have to say.
