I am curious since I am about to embark on the ty journey. I was reading about the newly discovered PML cases and Biogen's proposal that people take drug vacations. But I also read about how most people bounce right back into full swing attack mode when they stop the ty so that would make no sense to me. But once your start the ty is there a long term plan... say we are going to keep you on this treatment for X amount of time and then what? Do you stay on this drug forever?

Biogen has not proposed people take drug vacation because MS disease activity does return soon after stopping.

I spoke to George at Biogen a few days ago and he said it takes about six months for disease activity to resume in what they've seen for people who have stopped Tysabri.

My MS neuro said that we could take a break from Tysabri if we wanted to but that there was no indication that it has any benefit to do so. He said that other neurologists around the country have been suggesting it and if we wanted to, we could, he was just letting us know (those of us in the infusion room).

Two of my infusion roomies have been on Tysabri since the beginning of the Antegren trials, so way longer than me.

I hope that answers your questions too Leggz. I get my 32nd infusion next Friday.

I haven't weighed in on the statement from the CHMP/EMEA yet because I have been away and then had to work a bunch of OT, but I have a LOT of information that I will post tomorrow morning when I have time!
(and as usual, I have a LOT to say...)

OK, sorry to be late! Work's been busy lately!

The EMEA/CHMP issued a statement the other day that states that they are reviewing the risk/benefit ratio for Tysabri. http://www.eurobiotechnews.eu/servic...ash=58204a138f

The EU has no TOUCH program in place, and it is believed that they are reviewing the R/B ratio in advance of setting up a TOUCH-like program due to the number of PML cases. They stated the reported number of cases as 23.

As you will see when you click the link, the reporting news agency says the FDA has confirmed that there have been 23 cases of PML since 2006. Since BIIB/Elan both said in their quarterly conference calls last week that there were 15? cases, obviously what the FDA confirms makes it look like 8? more cases popped up in the space of a week? I'm sticking question marks in there because neither Biogen nor Elan confirmed that number yet, nor are they expected to, since they continuously state that they will not release the number of cases of PML anymore.

This is unacceptable to me as a Tysabri consumer. I've already let Biogen know that when they called me this week to tout their new patient support program. I am asking you to do what I and many others are doing. Please don't just blow them off if and when they call you about this support program. Please speak with the person who picks up the phone when they redirect your call.

Ask them if there is any way to ENSURE that your conversation is being taped. Tell them you want to be heard. Let them know how you are doing on Tysabri and then tell them you aren't happy about them keeping patients in the dark about the PML patients. Let them know you understand about privacy but that we are not asking them to give us names. Tell them you want the country, the age, the sex, the previous treatment history and what drugs they were on, how long they were on them, how long after prior treatment did they start on Tysabri and how long they have been on Tysabri. Tell them you want a call back from a superior in the company with some answers.

Tell them how you are unable to comfortably assess the risk when you have no information. Tell them it's too long to wait for your next scheduled visit with your neuro. Tell them you are very uncomfortable with continuing to use Tysabri because of the lack of information. Just keep talking until they get someone else to call you back. Let them know we are talking, comparing notes and moving toward action as a group worldwide. Tell them how you believe that having to search investment news is the wrong way to get information. Tell them you are NOT a mushroom and you don't like being kept in the dark and being fed ****. Remind them that they are making a LOT of money off US and that we as patients deserve to be kept up to date more than anyone else does, since we are the people who are at risk!!

Try to do all this while maintaining a polite tone. It may be hard to do but give it a shot. Just be firm and continue to state that you want someone to call you. Take the name of the person you speak to and ask them to be assigned as your caseworker so that you can follow up if you do not get a call back from someone.

We as a group can have an effect here. We deserve more information and we can make sure that we get it sooner rather than later. When Tysabri was withdrawn from market back in 2005, it was the patients who made a difference and we can do it again if we all work together.

On a more sorrowful note, the first man who was diagnosed with PML after Tysabri's return to market has died. His wife posted to a German MS site that is keeping track of PML cases along with people here in the US. I am not going to copy and paste it here since it is long and needs translating which makes it longer still. It's just sad and my sympathies go out to her and the rest of his family.

As usual, I'll post whatever I hear and hope you all will do the same. I hope everyone's doing well!

I just got off the phone with a Biogen support rep and told them about my concerns. I told her that I'm thinking of stopping taking Tysabri since the reports about PML aren't being made public anymore. She got nervous and started to read from a report stating the the company's new policy about regarding the reporting (or lack of) new PML cases.

I told her I was calling my doctor to ask him more about this. That really isn't fair that they should have to handle this though. My doctor's office isn't making any money off of doing the infusions. They don't charge much for the infusions and it costs them more than they make from all that's involved. Why should they have to do Biogen's dirty work?

RW. Great ideas. I'm getting ready to call Biogen now. Which patient died? There were 2 announced at the same time. Was it the treatment naive man who was on Ty. for 17 months or the 56 year old guythat was much worse off?

Suggest we all contact MS Active Source on Monday and state that we will take no more infusions of Tysabri (Threat of stopping is probably enough) until they provide us with more info on the PML cases.

MS Active Source in the US is 1-800-456-2255. Let’s hit them with some serious patient driven pressure.

A jump in PML cases is concerning, but also remember that Biogen/Elan are testing various assays to diagnose PML earlier and risk stratify patients. It’s possible that these PML cases were identified (in this large clump) as a result of testing patients (those in Trials most likely) with these assays possibly before clinical symptoms.

Chris

What clump of pml cases and where did you find this info ?
Linda