I'm glad that you pointed this out because like Cherie stated in an earlier post, when we mention this kind of news in the thread, some people become quite upset.

Biogen's marketing/sales department aren't dummies. They know very well that mention of the word PML with Tysabri sends their stock tumbling. They also know that the longer Tysabri is on the market the greater the number of PML cases that are going to appear. By not publicly reporting the PML cases as of the end of this month they are protecting the revenue generation of the drug...and THAT is what it is all about for Biogen and always will be.

And they are going to spread the info by "word of mouth" to the docs!! Biogen has one of the worst reputations going in the medical field when it comes to trustworthy information. And that was told to me by a neuro who was inovled in the original Tysabri trials!!

Harry

I'm not against Tysabri, as it is helping many people and I like that..:)

I have never trusted or liked Biogen and their business tactics. Their lack of care for the individual MS Patient is horrible.:mad:

The FDA should insist on Biogens reporting of PML cases, so I'm not too thrilled with them either.:D

I don't think those on Tysabri are upset by reporting of the news alone--it's the attitude of some on the issue that is the problem.

Yeah, I know exactly what you mean ... there has really been NO way to share news about this subject here, without the defensiveness. :cool: ;)

While I do not agree with the reason Biogen has chosen to not continue to share this information publically, personally I am happy that it has gone away. So long as I knew, I felt I had to keep updating or correcting on bogus information that was being shared. Now there will be no more opportunity for comments like " but X was from Germany" or "I heard Y was doing Z before T" ... .. and I am happy about that.

Unless it's in print from the FDA, I wouldn't believe anything we get second-hand from someone's neurologist either ...

Cherie

I hear what you are saying, Cherie and totally agree.

On any given internet forum, there will ALWAYS be differences of opinion. That is a given. *edit*

Harry

Jo and I have both had to do edits here. I had hoped her edits would show we are not going to allow this thread, intended to impart information, to disintegrate into dueling viewpoints.

We would appreciate if members keep this thread on topic and leave the snarky comments "at" each other out please. thanks

we dont like to lock threads, especially when they are related to important health issues, but unless this gets back on topic, it will need to be closed.

Thank you for the fairness shown in editing this thread.

Cherie

I had my 25th dose of Tysabri on June 5, 2009. It's been 8 weeks since then and I haven't been able to receive another does due to having shingles. My shingles are not due to the Tysabri. Unfortunately, I've had recurring cases of shingles for the past 12 years.

When I saw my neuro a few weeks ago we decided that I would take a vacation from Tysabri. I said I would take a few months off and my neuro said let's take it a month at a time for up to 1 year. As long as I don't regress....Tysabri has been wonderful for me because I'm out of a wheelchair and walking again.....I'll stay off it for 1 year. My neuro's concern is that Biogen doesn't always give info to the drs as soon as it should and I've been stressed trying to receive info. My neuro is concerned that the stress is effecting my emotional health and may have led to the shingles episode. It's been a bit over 2 years since I had my last episode of shingles.

The problem is that I really want to be on Tysabri but I also want more info. With the TOUCH program Biogen must have all the info it needs about the 11 PML cases. I would like to know what the commonalities are other than the length of time the patients were on Tysabri before developing PML. If someone who is eligible for Tysabri were to ask me for my opinion I would say "Go for it"!!!!!!!!!!!!!!!!! It isn't a cure for MS but it's a fantastic treatment. I simply want a bit more info before I begin again. I want to be able to make an informed decision and then I'm hoping to go back to my regular every 4 weeks infusion. I don't think that asking Biogen to give patients info on the medication is asking too much. I don't need to know every little detail of the PML patients' lives.....I simply want to know the commonalities other than length of time.

Shayna,

Biogen does have very detailed info on the 11 PML cases (importantly includes detailed info from 2 patients prior to their PML diagnoses because they were in the STRATA trial). They have communicated in their earnings conferences calls that they are aggressively pursuing several possible risk factors. I stress the word possible as they are scientists and they want proof/confirmation and validation with outside experts on the JC virus rather than coming to a quick conclusion that turns out to be be wrong. As a Tysabri patient (32 months), I'm impatient to get answers as well. A proper scientific process takes time - first theories and then validation/invalidation of those theories. I'd rather they properly confirm the theories and not run into problems again later.

Chris

I just wanted to say, I think we all know at least 1 person here on Tysabri, and I just want to wish those who decide on this medication all the best and healthy days ahead. :grouphug: