As per your link:

Do you see where they are referring to “ever exposed”, “in the clinical trial and post-marketing settings”, and “Cumulative total patient exposure”? They are talking about ALL persons who’ve EVER tried Tysabri, including those from the clinical trials.

As per my link (below), as at June/08 the numbers were:

The following paragraph refers to the "cummulative" numbers, just as your link did.

The 3,304 patients are those that were enrolled in TOUCH (in June/08), and had recieved Tysabri for 18+ months. The 6600 number is how many have taken it for that long in total, cumulatively, including all the trials.

Therefore, the 6600 number (which is now 9500, or at least last we heard in Dec), includes the 3000 (or there-abouts) from the trials, just as the "announced" number in June/08 did.

There is additional info on the international participants (at that point in time) in this link:

http://www.neura.net/channels/1.asp?id=942

Chemar has asked that we don’t argue about this any more, and I will respect that. If you wish to debate your understanding of the numbers vs. what I have just provided . . . we can talk about this further by PM (or email, if you don’t have PM rights yet), I am happy to do that. Perhaps we can come to an agreement that way, then report back here ...?

Cherie

Chris, are you still out there?

Obviously either of our sets of numbers up for interpretation, but maybe we can figure this out once and for all if we work together on it.

Cherie

Cherie,

Thanks for checking out my link. Please go back and look at my original point - There were zero patients at one year of Therapy on the slide until the Dec 07 numbers. This couldn't possibly be true if the original clinical trials exposure were included in the numbers. They did start new trials at the same time as the recommercialization.

When you think about it logically, it wouldn't make sense to include the original trial numbers with the post commercialization numbers as the circumstances surrounding treatment in the trials is substantially different from what they are trying to do in the commercialization setting.

Chris

Hi Chris,

I understand your point, but it doesn't explain mine.

Can we talk about this offline, then hopefully come back with an answer?

Cherie

Cherie,

I read through your link and all I can say is that the issue is as clear as mud. My link to Biogen's charts clearly shows that they did not include the prior clinical trials in their safety numbers reported there. With your link it is impossible to tell if the numbers exposed to Tysabri include the prior clinical trials or not.

With it being as clear as mud, it is clearly up for interpretation. I still believe my interpretation is correct as evidenced by my example but this is clearly not enough to sway you. (At the end of the day I live with this risk, literally as I'm taking the drug) We don't have to agree. The only takeaway we both should have from this discussion is that posting PML risk numbers is fraught with potential for error/misinterpretation. Is this fair for someone contemplating using this drug? The label says 1 in 1000 with new wording that the rate in monotherapy appears to be less than this. Let's let the regulators decide what the PML risk is in monotherapy based on the correct patient exposure data in monotherapy.

Chris

My experience with statistics is that they are usually biased. People use statistics that flatter themselves. We saw this all through the last presidential campaign. Each side used what stats best fit their agenda.

It is truly as Mark Twain said, "There are 3 kinds of lies; lies, damn lies and statistics."

What it boils down to is what each person with MS feels comfortable with. I could never be like Cherie, never having MRIs, not taking any DMD. I would find it difficult to look at my husband/children/grandchildren and say I didn't use what was available for me, so now you get to take care of me.

I fully realize that I may end up not being able to care for myself someday anyway, regardless of the treatments I'm using now. But at least, and I mean least, I can say I gave it my best shot with what information/medicine I had available to me at the time.

This is evident with me being on Tysabri, when really, I'm probably a very, very mild case of MS. I figure I want to stay that way. It helps that I have double insurance coverage, make good money, and so that is not an issue. I believe I prepared earlier in life to get to this stage, not knowing then that I'd be in this situation now.

If life hands me PML, so be it. I'm fully prepared to meet whatever challenges lie in front of me. I have faith in Tysabri. Sometimes that is better than statistics!!!

With all due respect, this may be Cherie's decision, but the 2 of us live in Canada. MRIs here are a bit 'different' than in the USA. They are not done frequently in a lot of cases. Heck, I'll be lucky to have another one myself. The waiting lists to have this particular test done are quite extensive.

I've heard the same in other countries as well. Medicine is not the same everywhere.

Do you also supplement elsewhere beyond DMD's or Tysabri (as examples) for your disease? If so, what have you found that has worked for you? I'm much like you, I want to ensure that I'm doing the best I can for my disease course in my mind. I'd be interested to hear what other changes you've made.

I understand what you are saying about the MRIs. If I was in a different financial situation, I'd probably be more conservative. I was just stating that it would be difficult for me to be that way. Cherie seems to be at peace with her disease management, and I think that is great!! We all have to do what works for us.

I just know my personality, and know I could not be that way.

As far as other meds/treatment and such, I take a multi-vitamin and 2000 of Vitamin D-3 daily, and my bp med that I've been on longer than my MS dx. I walk a couple of miles 4 mornings a week with my neighbors, in better weather up a hill! I still need to lose about 50 lbs., so that is a battle I have always suffered with.

I don't drink alcohol or smoke. I take 1/2 a provigil occasionally when I know I have meetings late in the day. I drink a lot of Dt. Dew to help with fatigue. I go off it occasionally, but I always find myself back with the bad habit.

I go to bed early if my body dictates that I need the rest. I've learned to not let things stress me out, and my religion helps with inner peace and a sense of my belonging in the world, and my mission in life.

I give service to others as much as possible. For example, today I spent an hour at a local nursing home playing the piano. Then later this afternoon I took a meal to an older couple where the wife just had surgery and was in poor shape. I still had time to take a small 15 minute nap, and play games with my son and DIL after having Chinese take-out for dinner to celebrate the new year.

Focusing on others needs is a great way to minimize any discomforts you may be feeling personally.

I laugh and I love. I've given up the need to always be right. This is probably way more than what you asked for. Brevity never has been a strong suit of mine!

See, we're all so very different.

I gave up soda entirely a year and a half ago. I had some recently only when I was very ill with a throat virus (ginger ale is great when sick!).

For me, bigger than my DMD is my diet. I went low Saturated and Trans fats and cut out red meat entirely. I am so much more aware of what I eat now, where I wasn't before.

I'd stop my DMD before I stopped eating this way. It's almost the Swank diet, but there are some points of Swank I can't observe (I can't have fish/seafood etc due to allergy).

Quitting smoking was a big piece of the puzzle for me as well And exercising daily. Positivity, definitely!

I agree with your comment about stats, 4bm. One plus one still equals two though, no matter how you swap the numbers around.

Everyone has to do what they feel comfortable with for their own personal reasons. You are accountable only to your loved ones, and me to mine. Only time tells if they were good choices . . . and so far I've done well with mine.

Let's talk again in 15 yrs or so though . . .

I've had this disease a LONG time, 4bm, and suspect that am much older then you. I've had a good life, and will have no regrets.

Chances are you will eventually learn to be at peace with this disease too.

Cherie