Originally Posted by Riverwild

Scroll down to "Revenue Performance" and it says as of September 30, 2008 there are 35,500 patients worldwide. In the US there are more than 19,500 patients on Tysabri commercially. There are more than 15,300 patients rest of world on Tysabri commercially. In global clinical trials there are more than 700 patients. Cumulatively in the combined clinical trials and post marketing settings there are more than 48,000 patients who have been treated with Tysabri, of those patients 18,000 have been treated for at least one year and 9500 have been treated for more than 18 months.

That was September 30th. The run rate at this point for Tysabri is around 325 per week worldwide signing up. That is straight from the rep's mouth. That would make it a conservative estimate now of 37,500+ patients commercial use worldwide.

Of those patients only one can truly be considered monotherapy. We were not talking exact stats. I was reporting on a seminar and what was said there. That is where that figure comes from.

Of the 3 people who were diagnosed with PML prior to Tysabri being withdrawn, we have debated that to death. One was a Crohn's patient who died from what was diagnosed with astrocytoma. They dug that patient up and changed the diagnosis to PML. The patient was on immunosuppressants. The second patient was also in a combo trial with avonex and Tysabri. That patient is alive. The third patient, Anita Smith-combo trial with avonex and tysabri- was misdiagnosed with MS and died from PML.

Monotherapy...ONE patient, with a questionable diagnosis of PML at this point.

Deaths from PML...TWO, one with Crohn's and a history of immunosuppressants, one in a combo therapy trial who was misdiagnosed with MS, both from before withdrawal.

I am not sure what you want here Cherie. Do you want to argue what was said at a seminar in a conversation? I had a witness to what was said. Do you just want facts and figures? Go hunt them down. I have a full time job, along with many other things going on in my life. I've got thousands of pages of studies and information on Tysabri. I don't have time to go through every page to debate with you over stats.

I've been involved with this drug for many years. I have done my homework. The fact remains that hundreds of people are benefitting
from it. I am sure we will hear more about PML and I am sure a lot of people will decide not to take Tysabri and that is their choice.

Originally Posted by yeahbut

I am that witness, Cherie what she said did come right from the rep's mouth!

Originally Posted by Riverwild

I am back to edit my previous post for a typo that I made.. I am not going to change the previous post, but make the change here so there is no question that the rest of the information stands as posted.

"They admitted that the monotherapy rate of PML is 2:35K+ at this point."

That statement should read 1:35K+

One patient, naive to ANY treatment outside of steroids, no interferons, no copaxone, no immunosuppressants, nothing. That is the ONLY patient who was truly a monotherapy patient out of every patient who has been diagnosed with PML and that is also the patient whose diagnosis is in question at this time.

Originally Posted by lady_express_44

Perhaps the Biogen rep said 2:35K, or perhaps he said 1:35K . . . but since I was not there, I will not attempt to debate what was said or interpreted from that Biogen sponsored seminar.

Before we try to get into the “hearsay” that is out there though, let’s see if we agree (or if disagree) on the published “facts” to date, as I know them:

1. SIX people have been identified as having gotten PML while on Tysabri; two in the MS trial, one in the Crohn’s trial, two from Europe, and one from the USA.

2. The acceptable ratio of PML (from when it was brought back on the market) was determined on the basis that 3 people in the trials, of the approx 3000 people that participated, came down with PML; 3:3000 (or 1:1000).

3. The “mean” length of treatment, whereby PML surfaced in the trials, was determined to approx an 18 month period.

4. There were a cumulative 6600 people (including those in the trials) who have/had been on Tysabri for 18+ as of Aug/08.

5. The latest number cumulative (including those in the trials), that has been published for those who’ve been on Tysabri 18+ months, is 9500 patients.

I have links to all of the above statements, but if anyone has contrary written evidence, please provide it.

Once we determine where there are misconceptions on those points (above), we can rectify our perceptions and then can go forward with any further debate on "hearsay" and number crunching from there. P

Cherie

Originally Posted by Av8rgirl

Thanks Cherie. Once again you have all the facts!

Originally Posted by 4boysmom

My guess, from reading through this thread Cherie, is why bring up any remarks at all if you are not on the med, and are only trying to be negative?

I'm only reading this thread because I'm on Ty, and I want to hear what others say about it. I don't want to hear a negative slant from someone that has never even been on the drug. Stay off the Ty threads unless you have a stake in it! I never contribute to Copaxone threads because I have no experience with it.

If someone has been on it, and wants to say something negative about it, that is great! In fact, I question often if my being on Ty is the correct thing!

But you know what I've learned from this thread? I'm grateful my neuro went from Avonex to Rebif, and then to Ty so that I'm on it now without ever having one of the other "harder core" meds that could possibly contribute to PML. It will remain to be seen.

You see, I'm a 47 year old woman who only has some balance issues and a tingly left hand, works full-time and in most ways doesn't suffer from anything serious because of my MS. And that is how I want to stay, and that is why I'm on Ty! I don't want to get worse. I want to be in great shape 20 or 30 years from now.

Avonex wasn't strong enough (more lesions after a year), Rebif made me tired and somewhat itchy, but it wasn't horrible, nothing in my bloodwork anyway. So I could have stayed on, but instead switched to Ty because I felt it was the best med out there for keeping me as I am today. Only time will tell if that decision was correct. I have faith that it is!