[komokazi]

Al Sandrock (Head of their Neurology Group) commented yesterday that he believed that 4/4 of the PML patients who were treated properly were alive.

He presents second in the webcast available at the following link

http://investor.biogenidec.com/phoen...ventID=2141013

Also the slides for the presentation are available in the Reaccelerating Tysabri PDF below.

[Riverwild]

Heard that.

Also heard from my neuro today: The U.S. patient (Deceased, 49 y.o. F, 14 infusions, previous treatment with methotrexate, last methotrexate 4 months before first infusion) and her family refused treatment and had no PLEX or antiviral treatment after diagnosis of PML was delivered.

I am looking for information now, but it's pretty scarce since she's U.S. and HIPAA laws kept everything private.

[dmplaura]

It's very positive to hear of those who developed PML and received treatment lived.

I'm just wondering what type of permanent damage results from PML?

If a patient on Tysabri does develop PML, can they resume Tysabri treatment following treating the PML? Or is development of PML basically the end of the road as far as Tysabri for that individual?

[Natalie8]

Can someone summarize what was in the webcast? I don't have time to listen to it. Thanks!!

[Riverwild]

Originally Posted by dmplaura

It's very positive to hear of those who developed PML and received treatment lived.

I'm just wondering what type of permanent damage results from PML?

If a patient on Tysabri does develop PML, can they resume Tysabri treatment following treating the PML? Or is development of PML basically the end of the road as far as Tysabri for that individual?

Good question Laura!

I would think it would depend on a number of circumstances.

What other treatment was the patient on before Tysabri and is it thought that the treatment prior to Tysabri contributed to the development of PML?

What damage did the PML cause and did the patient recover from that damage?

Is the patient healthy and capable of making his/her own decision?

Is there any reason that this patient should NOT be on Tysabri, after reviewing all the evidence at hand? Does having the JC virus and resulting PML mean that it will happen again since it happened already once? I think THAT will be what would preclude Tysabri from being continued!

Unfortunately, we don't hear much about what happens to patients who develop PML except for their treatment for the PML at this point.

The husband of the last patient diagnosed with PML is blogging about what is happening with her. The translation of it is a little spotty when you use a translator service like Google, but the information is clear enough to be understood.

What the drug companies fail to understand is that we are not ostriches, even if they treat us as if we should be. We are actively seeking information and sharing it, correcting information that gets skewed in transmission, and following up when they only give us the sketchiest of details, and your question is a VERY good one and one that I don't think has been asked yet!

I'll see what I can find out as far as the info available on this but I bet it's NOT something they are discussing at this point.

[dmplaura]

I'd be interested in checking out the blog if you have a link around!

[lady_express_44]

Originally Posted by dmplaura

It's very positive to hear of those who developed PML and received treatment lived.

I'm just wondering what type of permanent damage results from PML?

If a patient on Tysabri does develop PML, can they resume Tysabri treatment following treating the PML? Or is development of PML basically the end of the road as far as Tysabri for that individual?

Laura, this is a little outdated now, but is fairly accurate with regards to the potential damage that can occur with PML:

http://www.ninds.nih.gov/disorders/pml/pml.htm

It "looks" a lot like an accelerated and ugly version of MS; in test results, symptoms, and longer-term disability (if the patient survives), so that is one reason it is critical for PwMS to be managed by specialists who recognize the symptoms and perform the necessary testing as soon as possible.

Historically, it most often killed non-AID's patients who got it (i.e. those who who got it due to pharmacological agents, like Tysabri). Biogen has determined a way to cleanse Tysabri out of the body quickly though (Plasma), and they are actively testing alternative treatments to manage the disease when it occurs. Hence, more people are surviving PML (and IRIS which sometimes occurs at the same time) ... but we don't really know too much about the patients quality of life if they do make it through.

The US has the TOUCH program, which monitors patients on Tysabri fairly stringently. That is not true in Canada though ... and as you know, MRI's (and LP's) are not something they will usually do at the drop of a hat here.

I would be truly shocked if anyone would agree to Tysabri after getting PML once. In fact, depending on how much damage occurs the first time, some people might immediately opt to not try to recover from PML, i.e. refuse Plasma, and choose probable death over THAT quality of life. I doubt that it would be permitted anyway, as I believe that a pre-requisite for Tysabri is that a person does not have PML already.

Cherie

[komokazi]

There could be updates on all the PML cases at the American Academy of Neurology Meeting coming up at the end of April. May provide some insight into the level of disability of the 4 from PML.