Wiz, yeah isn't it weird to suddenly realize you just feel better after being on it for awhile? It's been a year and all of a sudden I've just noticed changes--it did come on gradually.

RW, yes the report that said "stable" and "no new lesions" was awesome. All my results get posted online so I can follow everything. Nothing has changed in almost 2 years since I was diagnosed. It makes me think that all my anxiety was for nothing. But that's part of the monster of this disease, right?--mastering the fear about the future. Now I'm trying not to worry about PML. 5 cases in 8 weeks doesn't help.

Link where you can get more detail about the PML cases

Sorry, don't want to get into trouble linking to this

Go to the Elan.com website and poke around in the medical information section.

Cases 8 and 9 had very low JC Virus counts (detected early) even though they were both treated with steriods prior to PML diagnoses.

Interesting stuff in that detailed report. I'll be watching to see what they have to say about the last patient.

I'm wondering if I am being a pollyanna or if I really can feel better that only 2 cases of pml were in the U.S. This month I rec'd #35 and it is a bit nerve racking how many have recently been at around 30-35 doses. BUT, only 1 was at 30+ in the U.S. and the other at 14 and this is out of 20,800 people being on Ty in the States. I get my figures from biogenidec.com, investor relations.
Any input...
Linda

US Cases

May 18, 2009 ~ 22 months started July 07
Oct 29,2008 ~ 13 months started Sep 07

I think we have to remember that there are MANY people who have had long term exposure to this drug as a result of their being in the trials (P1, P2,P3) from the start, who haven't developed PML.

Some of them are at 60+ doses already and I believe a few may be up to 70 doses or better by now!

While they have had drug holidays because of the pull from market, end of trials, etc., they still have a LONG lifetime exposure and didn't develop PML.

I think we are going to see more people going on Tysabri who don't have the risk factor of having been on ANY other therapy when all is said and done. (which is what I was trying to do when the drug was pulled in 2005)

Me again...

I was looking through the excessive list of files in my laptop and found some things that may help folks to understand where we have come from the time the drug was pulled and where they started looking at PML and Tysabri.

The first is the conference call from Biogen Idec the day Tysabri was pulled from market Feb 28, 2005. It's LONG but there's a LOT of info in there.

http://siliconinvestor.advfn.com/rea...msgid=21088871

The second is Lauren Roberts' blog and there's a WEALTH of info there too. I found one patient who sent her a letter who has been on Tysabri since July of 2002 with an 18 month break while Tysabri was off market. That means the poster has been on Ty for a total of 66 doses+-.

"As a study patient, I have been taking Tysabri since July of 2002...That's almost six years. I had to take a 18 month hiatus when the drug was connected to the deaths of two subjects in my study pool. That said, as soon as it was offered again, I jumped at the chance. When I started the Tysabri, I was having difficulty walking. After 8 Tysabri treatments, I was back to running. Only a half a mile at a time, but I slowly worked my way back and played competive (over 35 league) soccer for a summer!
I know that people are worried about side effects. All I can add is that my fellow subjects, if they were going to have side effects, they had them right away...within the first few treatments.
I hate the pernicious nature of this disease--going to bed not knowing how your health will be when you wake. This treatment has cured me of that nightmare."

http://lauren-livingwithms-aolcomlgl....blogspot.com/

Lauren is very careful and checks and re-checks her facts before posting.. She's been involved with Tysabri for a long time and her blog is one of the places I go when I need more info about past info on Tysabri! Thanks to her for her VERY comprehensive blog!

Just FYI...

Does anyone know if Vic ended up getting back on Tysabri, or if he evenually moved onto something else? I know his mind is on his wife right now, but I don't know if he ever mentioned a resolution to the $$ situation he ran into with T.

Cherie

This is a great blog, thanks for the link. I like the quote she has on there (from someone on a message board) that basically sums up what I've been feeling about the CRAB drugs:

As far as the PML risks go, even though I'm not in a place where I'd consider Tysabri, I still think that the issue is blown a little bit out of perspective. To compare, I know that this is another thorny issue, but compare to childhood vaccinations. Statistically there are higher risks of "adverse events" from those yet most of us still vaccinate our children, even though the risk of contracting those diseases is relatively small. With MS there is a sure decline in one's health vs. a low risk of a major complication. Given how well the drug works for most people I totally understand why people choose it. Being new to this disease I also really appreciate the fact that this type of drug even exists!

I don't know if he ever got back on Tysabri, Cherie. I've heard as much as everyone else has from Vic, that he is busy with his wife's recovery and that's about it. I am sure when he can update us he will.