EACH of the PML cases has it’s own individual “story”, and I'm really not interested in re-hashing each case with you again.

I think it suffices to say that some were on Avonex, some had/were treated with steroids, and yet others were only ever previously on DMD’s or NOTHING before starting Tysabri. Some come from America, others are from the UK. Some lived & some died. All very sad.

All 9 got PML, and they wouldn’t have gotten it without Tysabri.

Fully informed means understanding the risks . . . at least it does in my opinion. :confused:

This information is NOT posted for the benefit of those who've already decided 1:1000 is a comfortable risk ratio. It is an update for those who HAVEN'T yet decided.

Cherie

What's sad is what MS does to people physically and mentally and the corresponding impacts on family and friends.

Sorry, but the PML cases do have to be looked at at least in groups - PML risk and outcomes in the trial where they were using other immunnosuppressants/weren't looking for it/treating it and PML risk and outcomes in commercial use where they are using it in monotherapy/they're looking for PML and trying to treat it.

As I've said before risk is a function of chances of occurring and outcome of occurrence. If your concern is to fully inform patients considering Tysabri please give them the full and accurate information.

Tysabri scares the crap outta me! I dont believe I would ever consent to be on it. Just way too scary for me. I think those that do chose it are incredibly brave, and have boat loads more courage than I could ever muster. I think it has much much more to prove before I would even think about it. But thats just me.

Stay tuned. Biogen and Elan are working on new ways of detecting PML earlier and identifying those most at risk.

Dejibo - I am so in awe of them too!! I thought I was tougher but fear of discomfort and possibles showed I'm not. All you brave people - hats off. redpenguins re-doing with hy-cy is braveness to me. I'm hoping stem cell will helps me as a PPMS. It's hard to have nothing to try.

Nothing seems to be targeted for PPMSers to use. I guess being a minority in the MS world make us financially not a possible concern to big pharmiceuticals. Clinical trials for PP are rare.

I've been told that there are actually more considerations than finance with PPMS trials. They really understand it so much less which is scary considering how little they understand about RRMS. The damage is harder to monitor on MRI than RRMS, so they can't determine success by affecting lesion load. They also can't look at a reduction in relapse rate to measure success. It just makes it very hard to design a research study that can get funded. Am I making sense?? I know what I'm trying to say, but getting it from the brain to the keyboard isn't easy today.

My lesions are very atypical for RRMS, but look more like PPMS, however I have obvious relapses and remissions. I respond well to IVSM unlike most people with PPMS, so I am a mystery. My neuro doesn't want to label me PPMS because I don't fit that, but my lesions don't fit the other, so he calls me atypical MS. He honestly does not think that ANY of the current approved DMD's would help me at all, just like they don't help PPMS. It's such a weird disease with strange manifestations.

If he told me tomorrow that he thought Tysabri would work for me, I don't honestly know what I would do. I have several friends who are on it, but I don't know whether I would be so brave. I can see that the odds are actually improving over time from what they originally published, but I think I would like a couple more digits on the one side of that ratio. :eek:

A drug like Tysabri has a way of truly finding not just the weakness in a country's medical system but in pointing out the various ways the docs and infusion clinics handle the patients. Some of the stories written by these patients on the net really show what the varied level of care is with this medication.

And now Biogen and Elan are spending millions of dollars on new ways of detecting PML! To say that they were not looking for PML or similar conditions during the trials is simply not correct. Biogen was warned repeatedly by Dr. L. Steinman (one of Tysabr's founders) that these conditions were very probable and likely to occur. So what did they do?....push for approval after one year of Phase III trials which of course got them into a real mess!

You have to understand what Biogen and Elan are all about in the world of big pharma and IT'S NOT about the health of MS patients. It's about the bottom line and getting as much profit as they can.

Tysabri is an immensely expensive drug to use and the follow up costs with patient monitoring and MRI's is making it beyond expensive. The efficacy has been similar to other MS drugs....some do very well on it, others more or less remain the same and some become very sick and have to stop it altogether. I guess time will tell if it was worth it.

Harry

Harry,

God bless you but I have to disagree with you. I thank God for Tysabri because I feel so good since being on it.

I'm thankful that it's available in the US and that we have good health insurance (though very expensive) and I can have the infusions.

I'm also glad they're looking for better ways to detect PML. I don't know what more they can be doing. They're keeping an awesome drug on the market IMO for those who need it, and taking steps to avoid the worst of all side effects (PML).

We need naysayers to keep things in balance so I don't fault you or Cherie or others for questioning Tysabri or other drugs. Matter of fact, I used to be in agreement with you. But now that I've been on Tysabri for almost two years, I have to agree with those who were singing its praises for so long since I feel so much better and my life has improved.

Harry,

I'd highly encourage you to look at the abstracts being presented at the AAN 2009 Meeting next week. There will be a lot of data presented on patients pre and post Tysabri (Relapse rate, EDSS, QOL measures) that may alter your efficacy perception relative to the CRABs. You might also want to recheck your info on CRAB costs as their prices hacve crept up to within 10 to 15 of Tysabri's costs.

Chris