Wiz, I am of two minds, to be honest. The important thing to me is that people feel good, AND that they are safe.

Once all the kinks are worked out of Tysabri, and I really hope they are one day, I might very well try it myself.

For now, there are some 40,000 people on it, and many millions not yet willing to try it. I am just one of them, and I don't mind saying why I won't.

Cherie

I appreciate everyone's input on the subject. It's such a personal choice, like any of the DMD's. Seeing my life, my body, my mind go downhill for the last few years, I decided it was worth the risk. Someone else with the same situation could decide something completely different. I don't think trying Tysabri is any braver than those who choose to take nothing. I've been down that road, too. We each have to decide what is best for us, and knowing the risks either way is important. I know MS is taking my life away one little piece at a time and will continue to do so. With Tysabri, there is a relatively small chance of contracting PML, but in the time that I don't, I feel better than I have in years. For me, it's SO worth trying.. Just my two cents!

Hi Wiz,

My concern isn't with Tysabri because the drug is obviously helping a number of people...and you can certainly atest to that!!

It is with Biogen's handling of the drug from day one and the incredible rush they did to get it into the MS market. In my opinion, that was driven by pure greed because of the huge $$$ potential they saw after year one of the Phase III trials. They went so far as to partly publish their marketing plan on the internet, stating the hundreds of thousands of MS patients they expected to use the drug as well as the millions and millions of revenue they were going to get. They figured that within 18 months of its approval, they would recover all of their development costs.

They took this course despite numerous warnings from other researchers about the potential problems that Tysabri could cause. We saw their top execs makes millions in stock option profits before the drug was pulled and then they raised the cost of the drug about 20% before it was re-released...so it was the MS patient/insurance companies who were made to pay for their mistakes.

Again, that's what irks me about them. I wish you continued success with the Tysabri infusions and hopefully you remain healthier than in the past.

Harry

Chris,

I am used to seeing the abstracts for MS medications over the years...for the past 40+ years in fact. And yes, those being presented for Tysabri at the AAN 2009 meeting will look very nice...they always do.

My comment about Tysabri's relativity to the CRABs has to do with the generalities of patients improving, staying the same or becoming worse. Not in the actual comparison numbers because the CRAB numbers are really quite lousy and it doesn't take much to better them significantly. Tysabri's breakdown in these three groupings will be the same because of the huge different effect medications have always had on MS patients.

And to comment on the price increase of the CRABs....pretty disgusting!! Here are drugs that got orphan drug status (with the exception of Rebif if I can remember correctly) from the FDA and have been around for about 15 years....yet their price continues to go up only because of the huge cost of Tysabri. But their advantage, if you can call it that, is they don't have the ludicrous infusion costs that go along with Tysabri.

I'm afraid, Chris, the MS patients of the world are being taken advantage of by these companies whose sole motivation is adding to the bottom line. Now there is nothing wrong with trying to improve your profits to the highest level but when you follow how these companies have done that with these drugs, it makes me shake my head!!

Take care.

Harry

I don't think you can blame Biogen for high infusion center costs. My last couple of doses of Ty were around $2650 for the med, and $150 for the infusion center. I don't think my Rebif or Avonex was much cheaper than that for the med. I'm on Copaxone now, and I don't know what the total is, just my co-pay.

I'll tell you what is heart-breaking. When you go on Ty, love being on Ty, then develop NABs and have to go off Ty and move to Copaxone. PML was never a concern. If you get it, you get it. I could also be hit by a car, but that isn't going to stop me from driving.

Random thoughts from an unhappy C user!

While Biogen doesn't control the costs of the infusion centers, the very nature of Tysabri and its related problems have certainly thrown caution to the wind for these centers. And when there is possible high medical liability problems involved, up go the costs! The CRABs, in general, are about 25 - 30% cheaper but injecting yourself often and the heavy side effects for many users, make them more difficult to administer.

Sorry to hear that you ended up with NABs while trying Ty. Because of its potency, that is one of many problems with it. And while PML was never a concern for you, it is likely keeping thousands and thousands of MS patients from trying it.

Harry