As someone who loves statistics and has been accused of being able to argue the paint off of a barn.... (LOL), I daresay (and I'm sure someone will correct me if I'm outta line) seriously.....love y'all but I'm not waiting with bated breath for any kind of 'data resolution' or 'final consensus' here. Maybe I'm alone in that? Who knows...
But such finely sliced and diced analysis is not going to change peoples' behaviors or perceptions of Tysabri and the hope it provides to many.

If I deserve to be thumped, go ahead, just thought I (personally) needed to express this.

We won't thump you Becca! But seriously, I agree with you 100%. None of these discussions has ever changed my mind about any drug. I do my own research and listen to my doctor. I'll take Ty until I come to the conclusion that it either isn't working anymore, or they have something better (like an effective pill).

There are plenty of subjects that don’t interest me either. I normally just don’t follow those threads.

Nailing these numbers is not about “the debate” over who is right or wrong. Frankly, even I couldn’t care less about that. This discussion is about giving people the information they need to make fully informed decisions . . . no matter WHAT the number is.

When weighing up this drug, I'm betting almost everyone at least considered the 1:1000 odds (over a mean of 18 months) of getting PML. That might not be considered too big of a risk for some people (and/or their doctors), yet for others it definitely IS enough to deter them.

Those odds might increase to 1:500 or 1:20, and I would suggest that might make a difference to many people, even some that are currently on it. Personally, I would not choose Tysabri at 1:1000 (or slightly more), but if the odds dropped considerably, to say one in 6000, 35,000 or 50,000, that very well could matter to my (and likely some others’) decision.

There are people on the net that are suggesting that “there are only 4 cases of PML in 35-odd thousand people now (or "1:6000", so no need to worry)” and/or some of the PML cases “don’t count, because .... blah, blah, blah”. That is misleading, IMHO, and may give people a false sense of security.

Considering the interest in this information (by patients, shareholders, etc.), I would think Biogen would be updating us regularly with exactly how many people have taken this drug for longer than 18 months, and the number of confirmed (not to mention unconfirmed) cases of PML. But, I suppose as long as everyone “thinks” they know, and those assumptions look good for the company, they have no motivation or obligation to clarify any misunderstanding there may be.

I am interested in clarifying this once and for all, so we have a starting place to “build on” for future announcements on numbers . . . But for those who “don’t care”, please feel free not to follow the results of our discussions with Biogen.

Cherie

I find that statement very interesting coming from someone who smokes, whose risk of lung cancer has got to be a lot higher, and also affects family members living with them.

Why the concern over PML and Tysabri?

I see two different situations here. If a person chooses to smoke, he/she accepts the risks involved with that.

And "why the concern over PML and Tysabri?" ....hmmm, if one has to ask that question, well...

Harry

I don't quite understand what you are saying Harry. I was remarking that lady express 44 would not take the risk of tysabri with odds of 1:1000, yet she continues to smoke.

Odds of lung cancer are more like the 1:500, and 1:20 with smoking. One report I read recently stated 1 in 4 smokers would develop lung cancer, and most died within 18 months of developing the disease. A lot worse prognosis than PML with tysabri. But with all her research I'm sure she knows that already.

She wants everyone to have the right figures to base their decisions on whether or not to take tysabri. I just wonder why it is so important to her for us on tysabri, and those future users to know whether we're dealing with 1:1000 or some other figures. Yes, there is a risk. I answer those questions every infusion I get. Yes, I feel crappy for 1/2 hour after the infusion, having chills and headaches that aren't a lot of fun. The rest of the month I'm super!

Any med we take has an inherent risk. And it is a choice we make, just as smoking is a choice we make. I probably lived for many many years not knowing I had MS. I know for sure I went for four years with MS before being dx'd because it is a symptom that remains with me.

I felt and did much better on no medicine. It is a choice now to be on tysabri to keep from getting disabled 20 years down the road. I plan on living a long, long time.

Tobacco, drugs, alcohol, food, etc. are very strong addictions for some people, and in my case, smoking was one I picked up when I was 12 yrs old. I have tried to quit (as I mentioned earlier in this thread, when you asked about my bad habit), but I have been unable to do it.

Tysabri is not an addiction, and I am no longer 12 yrs old.

I don’t claim to be perfect, but just because I haven’t been able to manage one bad habit, doesn’t mean I am not entitled to make adult decisions about whether I want to take on additional risk, does it?

I am not making judgment on your personal choices, or asked you about your imperfections, 4bm. I don’t care what YOU do.

Cherie

Don't get me wrong, Cherie. this subject does interest me. I follow the Tysabri story pretty closely. I have friends on this drug, conversations with my neuro and ms specialist about this drug, and might have to consider taking this drug in the future (like anyone else with MS, I realize it behooves me to keep options open). I'll continue to take an interest in Tysabri threads.

I know you're a numbers and stats girl, I can appreciate that - we're similar in that respect, anyway. Whether you continue this discussion here is totally up to you of course; I have no say about that and it's a-okay with me.

I just wanted you to know that some of us are not waiting to hear the verdict you and whomever else comes to, because we've already made our well and fully informed decisions in partnership with our respective neurologists; which ultimately, is as it should be.

For all the rest, I hope they stay tuned if that's their desire (and that they follow up with their neurologists after the fact).