Hi Natalie,

You seem to be genuinely interested in hearing answers to your questions, so I will try to respond, at least from my personal perspective.

Firstly, if there wasn’t this controversy about Tysabri, I suspect most everyone with insurance (including probably myself) might try it. It is at least as effective as our other options, it is much more convenient, and there are less general side-effects. However, it is the fact that it is still considered too dangerous for some people’s/doctor’s liking that it hasn’t already stolen most of the entire market. That is also why there is constant conversation about it . . . there are still many people & medical professions who are on pins and needles about how safe it is, and may “appear” to be waiting for the other shoe to drop.

I empathize with your frustration about the constant discussion that goes on, however I feel it from an opposite point of view. From my perspective, the question should be . . . “why is it that every time someone gets PML and/or dies from it after taking Tysabri, there are others on this (and/or other) forum(s) who feel the need to” ... belittle or deny every fact associated to the published information? Clearly this is not very helpful for the VAST majority of PwMS who are still trying to weigh the true risks on this drug.

I understand why those on the drug don’t want to hear what they perceive as “negative” news . . . but “you” (current takers) have already decided Tysabri is worth the risk, and it is presumably working well for you (for which I am very, very glad!). You have already fully evaluated all the pros and cons, and are on top of all the news as it is published ... which is great. However, “you” are still in the minority on the forums, and there are many that have not yet concluded one way or another whether we may want to try Tysabri. Some have been patiently waiting the 2+ yrs to see what comes out of the woodwork, and THEY want to hear the latest news, even IF you don’t.

So, the discussion that ensues, when “negative” news is released, is mostly for the benefit of the people who haven’t made a decision on whether they want to try it yet, and/or for those who might change their mind knowing there are bigger risks than perhaps they wanted to believe when they made the decision.

As it is, much of the information that can be readily googled on Tysabri is outdated within a month or so, i.e. many articles still say “no PML deaths” since the reintroduction, or “only two cases of PML in Europe since the reintroduction”, etc. This can be very confusing to someone who is trying to weigh up the current news.

What has annoyed me personally though, since the very first questionable event with this drug/company, is there have been a handful of very vocal people (including those who are not even on it) who continuously deny every unfavorable event or issue surrounding this drug. Comments such as:

- “she didn’t really have MS” (so therefore that Tysabri/PML case doesn’t count), or
- “he took an immunosuppressant or immunomodulatory drug in conjunction” (and that’s the ONLY reason he got PML), or
- “there is a rumor that he might not have really had PML” (so we won’t count that one either), or
- “those people in Europe aren’t on TOUCH” (so “perhaps” the PML wasn’t caught early enough... “oops”), or
- “she might have died from another treatment” (even if it THAT treatment was only required to combat the PML caused by Tysabri)
- Etc.

Yet when someone tries to clarify with a contrary perspective, or when the truth ultimately comes out, people jump up and down saying “why so negative?” or “why imply I told you so?” My question is, “why bother trying to deny the news to begin with?” Why not just sit back and wait to see if the crux of any new Tysabri news proves false (which in my experience, 99.% of the time it does NOT), then clarify it (with LINKS) later?

Frankly, I’d much rather that Tysabri proved entirely safe, and that all the reported cases of PML were just some “fabrication from some competitive rival”. Time and time again though, the people who have claimed the news is just “speculation” have proven dead wrong . . . so of course there are some of us who more than fed up with that merry-go-round. This has been going on for YEARS . . .

The most valuable publicity that Tysabri gets is through “word of mouth” by vocal proponents, IMHO. Unlike many other drugs, the marketing plan for this drug is clearly very reliant on people down-playing serious side-effects, suggesting that any news or comments are “misleading”, by implying bogus statistics, by comparing Tysabri to other “dangerous” drugs, etc. There are even some forums (especially those sponsored by the pharma companies) that have gone as far as BANNING anyone who confronts any misleading Tysabri-“positive” statements!!

We have probably all read comments about how one drug or another has affected someone negatively. So what? . . . are we not supposed to talk about these things because it is not being “thoughtful” or “sensitive” to people who are taking it?

It takes two to tango on these discussions, Natalie . . . and as much as some (current and prior) “takers” seem to think they are the only one’s entitled to express their thoughts, “you” are obviously going to be at least somewhat biased. For the benefit of those who have yet to make a decision on this drug though, IMHO it is important to encourage rights of ALL to communicate openly about the pros and cons.

Cherie