I think the number of patients already enrolled is more of a testament to the inadequacy of the CRAB meds. The CRABs are almost universally hated -- even by those who believe they're getting a modest benefit from them and find the side effects tolerable.

I'm guessing the reason some of them aren't around anymore is because there isn't too much say about whether Tysabri is going to get re-approved. I stated from the very beginning, after the drug was originally pulled, that the FDA would re-approve the drug because there is simply too much money at issue here.

Exactly the same thing happened over on the ThisIsMs forum after Tysabri got its original approval...only in the opposite way. A few other people and I continually stated at that time that Tysabri was a potentially dangerous drug and that a great deal of caution had to be followed when using it. I can't count the number of times some readers called us "Tysabri bashers, fear mongers and hidden agenda people over the course of about 4 months. And then, out of the blue, Biogen pulled the drug after PML showed up. All of a sudden these people disappeared and the name calling stopped...wonder why?

And I somehow doubt that we have heard the end of the problems with Tysabri. This drug plays with the immune system too much and there is simply too much unknown about it at this time.


Won't disagree with you on that one...but in the Big Pharma business, these competitors are ruthless when it comes to bashing one another. Not surprising when billions of dollars are on the line!!!

Afraid I can't agree with you on the safety of Tysabri at this time....even Biogen admits they don't know any long term effects on the drug. As for the efficacy, it really doesn't take much to beat the record of the CRABs, does it?

Harry

We are lambs being led to the slaughter. It's not just PWMS, though. It's any disease that's medically poorly understood. As a society we've become so conditioned to the idea that drugs will eventually fix, or at least help, any medical condition that we often submit to drugs that are as poorly understood as the disease we may have. Many times, belief in drug intervention is completely justified. In the 20th century medical understanding proceeded at warp speed. But medicine is not an exact science, a fact that many people find difficult to accept. In particular, medical understanding of the CNS, brain chemistry, human psychology, and the things that can go wrong with them are not yet ready for prime time.

I have PPMS. My neuroligist and I know this because for thirteen years I never had a relapse, but only steady progression that got faster as the years passed, and never remitted or slowed down. What you might call a textbook case of PP. During the last two years, I've had several episodes that seem to be relapses, causing my neurologist to think that my PP may now be relapsing progressive. My MRI doesn't enhance, indicating that there is no active inflammation involved. My point in talking about all of this is to explain why I have resisted all of the current drug interventions for MS. In my particular case, none of the drugs make any rational sense. And "you never know" doesn't work for me as a reason for taking heavy hitting drugs, particularly when their long term consequences are lethal or unknown. Because of this I have a jaundiced, not to say cynically skeptical, view of the efficacy of current MS drug treatments.

And there have been times when I have been accused by other PWMS of "losing hope." Since I never expected medical science to come riding to my rescue, I never quite understood which hope I supposedly lost. I follow every new drug intervention that comes along, looking at each one with my own personal MS profile in mind. None of them has held up for me, although several years ago I allowed myself to be talked into trying a course of cytoxan. It did nothing for me. Nor did the solumedrol given in tandem with the cytoxan.

I think that any drug intervention is a personal decision made by a PWMS. Not only is MS poorly understood medically, but it's highly individual. My neuroligist calls me "the other doctor," and that's the way it should be. PWMS need to be especially proactive, researching their own drug options and not accepting drug treatment until they understand the pros and the cons. Neurologists are children of society every bit as much as we are; being doctors, they want to fix illness and are members of the drug culture. People accepting heavy hitting drugs need to be as secure as possible in their own minds that they're making the right choice.

Chris

Well said. Chris. Thank you.

KingRex, are you on Tysabri or going on Tysabri? I'm sorry, if I missed your MS story somewhere, but just wanted to ask...Thanks.

I appreciate your vigilance, Harry. Somebody's got to do it. Some of us PwMS are not as proactive as we need to be and we need people like you to remind us, even if we don't want to hear it.

The "talking heads" I was referring to are not the denizens of these boards; they are the "experts" trotted out by Teva and the other drug companies whose drug sales stood to suffer if Tysabri was approved.; all those doctors on their payrolls, via lucrative "research grants", who carried on so, as well as the columnists who seemed to consistently "get it wrong". Why are they all silent now? If this was really about safety, why would they stop talking?

IMO, it was all about money...you're right. You just have the identity of the bad guys wrong.

Don't I know you from somewhere?

Rex,


These "paid experts" by Teva, Serona and Burlex are no different than those from Biogen/Elan. Before Tysabri even got into general use the first time around, Biogen sponsored a web cast in Philadelphia which featured a host (he could have worked "Let's Make a Deal" with his antics) and a panel of "experts" in front of an audience of specially invited medical guests.

Talk about watching a circus of promotion by Biogen...big time marketing at its best!! All of these big pharmas have marketing/sales departments which spend millions on promoting their drugs to the docs and public. But don't for one minute think that Biogen's competitors have gone away. All of these people lurk in the background, waiting for the one event or incident that they can pounce on order to make the "other guy" look bad and perhaps get back a percent or two of that lucrative MS medication market....those 2% can translate into $ millions!! And with Tysabri, it isn't "if" something will happen, it's "when" something will happen.

Biogen/Elan are no different than the other people in this area...they just happen to have the latest MS drug out there. When these other pharmas come out with something else, the shoe will be on the other foot and Biogen will be doing exactly the same thing as these other guys are doing now. It has nothing to do with interest in MS patients but everything to do, like you said, about the money!!

Harry

Your name looks familar. Were you at PT? I may remember you from there, although I have holes in my head.

Not what I meant.



Riiiight...as I said, you seem familiar. Maybe MSWorld?

I don't get it I don't know you and I simply asked you a question. Although, I do go to MSW on occasion, I don't remember you from there.

If you are infamous there for not answering questions, then I understand. Forget I asked.