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

Thanks Cherie. Once again you have all the facts!

I presume you are being sarcastic...? :confused:

If so, please tell me which of those 5 specific point(s) are inaccurate? I will then provide the links to that information, and we'll go from there . . .

Cherie

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!

4boysmom, thank you for your post.

I know RW started this thread to give information on the seminar that her and I went to - to say the least it got a little out of hand.

I personally appreciate your post - hearing from people who are on TY is good for me and standing up for what you believe is wonderful!

:hug:

There was inaccurate information passed on in this thread, and obviously that is why I have responded with the correct information here. I have posted the facts, as I know them, and if anyone wishes to challenge that information, I am more then prepared to do have that discussion.

A person does not need to be on a treatment in order to be “entitled” to contribute published FACTS about it on a public forum. If someone gets on here and says, “the interferons have never caused flu symptoms” ... or “LDN can not cause increased spasticity in some people” ... or “Copaxone will never result in site reactions”... or “PwMS need 100,000 IU of vitamin D daily” . . . I will challenge that information too.

Respectfully clarifying an inaccurate statement, that has been relayed from a biased and unnamed pharma company rep, has curiously stirred up some “personal” defensiveness on this thread. I'm quite sure the rep would have rather the inaccuracy got posted without anyone challenging it, but unfortunately for him/her, not everyone is as gullible or easily intimidated.

To avoid further messying RW’s “notes” thread though, we can link to a new thread to continue this conversation. In fact, I think I will do that . . .

Cherie

And this thread is proof why I don't even bother to read about stats. Jim and I prefer personal experience to stats. Just because stats say one thing doesn't make it true for everyone. And why is it so important to be right? Just let the motion of the ocean take you away and let the storm brew somewhere else.

This thread is a simple personal experience, not a debate or who can find the stats contest. Those of us who have never tried this med would appreciate a simple conversation about the med and not a debate on who's right and who's wrong. I am more apt to listen to those with personal experience instead of what is written in some stat book.

JMHO

I agree whole-heartedly with that Sandy, which is probably apparent by the methods I've chosen to treat this MonSter. Scientific "proof" and "stats" can obviously be misrepresented and misconstrued, so I don't give them a whole lot of merit either. :rolleyes:

However, if an inaccurate "FACT" is posted, which might have the effect of influencing others, I will attempt to correct it.

Cherie

Mods, I'd appreciate it if you would lock this thread. It has run it's course and I would prefer it not be a battleground when it was started to provide information on what was learned at a seminar.

I understand that and appreciate a good debate when it's appropriate. But in all honesty, how do we know the facts you represent are the truth as well? Just because we can cite a source doesn't make it true. There are so many facts and ideas out that really in all truth, even those who one would think are accurate can be wrong.

I think the intention of this thread was to just make simple conversation and not fill it with debating facts. Sometimes I think it's best to pull away when it's obvious one is only stating what they experienced at a seminar.

I guess I appreciate simple concepts at this point in my life and not stats or back and forth rhetoric. After 20+ years with Jim having ms there really isn't a stat out there that wouldn't have my foot in it's behind. ;)

Maybe I have become simplistic in my thinking and that's Ok with me. RW is asking for the thread to be closed now and I think that's best.