NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - Tysabri Talk (https://www.neurotalk.org/multiple-sclerosis/4402-tysabri-talk.html)

Quote:

Originally Posted by kingrex (Post 31053)

Same thing with Crestor and Coreg - both of which I take. There is no long-term data because they're new. Still, we actually DO know what Tysabri, Crestor and Coreg will do - they will all improve the lives of those who take them.

Does that statement mean that by taking Tysabri for your MS, there is a guarantee that it will help you?

Quote:

There are now 4,500 patients enrolled in TOUCH, and 1,700 have received at least one infusion. As we get into calendar year 2007, the perceived odds of contracting PML (based upon the 3 deaths which occurred before the combo-effect was identified) will have dropped significantly.

Another "perceived" guarantee?

Quote:

IMO, patients should be allowed to evaluate the risks themselves. Those who, for whatever reason, would like to see Tysabri fail will predictably capitalize upon the "uncertainty" angle. Those with a real choice to make will look at tangible evidence, and they'll evaluate their own status with regard to the risk of an alternative (and less effective) treatment. Then they will make a choice, with only their own circumstances in mind...and that, IMO, is how it should be.

I totally agree with you in that most MS patients will make their own choice based on what they know about Tysabri or any medication. I can't imagine, though, that ANY reader here or any MS forum would like to see Tysabri fail miserably because that would only create far more suffering for the patient. And MS patients suffer enough on any one given day.

Quote:

A lot of people thought going to the moon was too dangerous. Others determined that the risks were manageable and that they could be overcome. Three guys died early on in the program, and as with Tysabri, the program was stopped while NASA determined what measures needed to be instituted, in order to make the capsule safe. NASA then resumed the program - and the rest is history.

I somehow think the NASA engineers had a better idea and handle on the risks than what the docs have on Tysabri at the moment.

Harry

Quote:

Originally Posted by SallyC (Post 31062)

And then a whole shipload were lost and that's the history.

But on Tysabri, I do agree that the PwMS should be the one to make the decision after being given ALL the risks and not just the hype.

Don't confuse the Apollo program with the Space Shuttle. The Apollo outcome was the parallel I was drawing, and that was indeed a success.

Quote:

Originally Posted by Harry Z (Post 31208)

Does that statement mean that by taking Tysabri for your MS, there is a guarantee that it will help you?

Another "perceived" guarantee?

I totally agree with you in that most MS patients will make their own choice based on what they know about Tysabri or any medication. I can't imagine, though, that ANY reader here or any MS forum would like to see Tysabri fail miserably because that would only create far more suffering for the patient. And MS patients suffer enough on any one given day.

I somehow think the NASA engineers had a better idea and handle on the risks than what the docs have on Tysabri at the moment.

Harry

Very little in this life is guaranteed; that doesn't mean we live underground or deny ourselves the opportunity to be well. And we both know that there certainly are those who would like to see Tysabri fail.

Quote:

Originally Posted by kingrex (Post 31248)

Certainly not anyone in this forum would rejoice in the failure of Tysabri. I hope it turns out to be a big success for us. But at this time, I still recommend caution.

I cannot imagine anyone would want Tysabri to fail, except investors who are doing stock options, and investors in competitive companies perhaps.

And the reverse is true too. That investors, and Directors of a Pharma will downplay (or even hide) information that detracts from the perception of their drug as Safe and as Effective.

Quote:

Originally Posted by BBS1951 (Post 31354)

That investors, and Directors of a Pharma will downplay (or even hide) information that detracts from the perception of their drug as Safe and as Effective.

Investors yes; Directors...not really. They do not hide information about drug safety - what would be the point? If a drug is unsafe, people will find out eventually, and failure to disclose adverse effects is very actionable.

Quote:

Originally Posted by kingrex (Post 31370)

In a fair world, one would think so. But look at what happened to me. Biogen was very sneaky about how they handled the recalled Avonex. And I became deathly ill from it. And attorneys told me it is not "actionable". They said it is so costly to sue a Pharma that I would have to have died or been permanently extremely damaged (like the PML patients). My damaged lungs and heart were not bad enough to warrant an atty spending money to sue Biogen. And Biogen was dishonorable and refused to pay me -- all I asked for was my lost wages. They refused.

Go back and see how Biogen handled the recall. It was a beautiful example of a company (not investors, the heads of the company) hiding information and downplaying it.

Quote:

Originally Posted by BBS1951 (Post 31448)

Sorry to hear about your troubles...but I don't think your experience proves that companies will withhold information about serious side-effects, especially since the trial results are disclosed in public. What CAN happen is that insiders sell their shares prior to the bad news coming out (paging Martha Stewart and Imclone!).

BTW...the attorneys don't spend the money suing Big Pharma - you do...and I think they were telling you that YOU couldn't afford the fees. Class Action suits are what usually get filed against these companies, but yours was apparently an isolated case, correct?

Anyway, best of luck.

Didn't some of the big wigs at Biogen dump some Tysabri stock, before they announced the PML deaths and stopped the sale of TY? They played it down as business as usual, but it didn't smell right.:rolleyes:

Quote:

Originally Posted by SallyC (Post 31520)

That is classic insider trading, Sally, and it's illegal. That's why Martha Stewart went to jail. If they're not in jail, then it didn't happen. Sounds like a message board legend. :)

Insiders have to register in advance to sell shares...they can't just decide on the fly to dump shares today before tomorrow's bad news comes out. I think it's 30 days.