12th case of PML from Tysabri posted today
 

3 from the trials + 9 cases confirmed in the last <11 months.

http://investor.biogenidec.com/phoen...82&p=irol-TPME

June 19, 2009, 34 doses, Ex-US

July 24/09 (when they are no longer going to be posting the cases publically on their website), is coming too soon though ... Not sure how we'll know about new cases then. :cool:

Cherie

we need transparency. I want honest figures about what is really going on with the brave folks that sit in that chair once a month. they are the soldiers that we are all looking towards for the long term results with this drug.

I want drugs that are more effective than the standard CRAB drugs, but when they start making things secret, it appears as if they have something to hide. That scares me.

When you sign on with Touch to take this stuff, you KNOW there are risks, and benefits. I dont understand what the issue is with being honest and up front.

Thanks for bringing this to our attention. God Bless those who do the research for us. I simply cant dig through every journal, article, and website looking for evidence.

Dej, probably with every PML case announced, I'm guessing, there are a 1000 people who either drop out or don't sign up.

With Biogen, it's all about the bottom line..:(. But, on the other hand, at least they came up with something that works a lot of the time.

It's all about the almighty dollar.

To keep the PML discussion in perspective:

European Doctors are not exactly shying away from using Tysabri in immunnosuppressed patients (which is identified as a potential risk factor for higher occurrence of PML)

Natalizumab treatment after autologous haematopoietic stem cell transplantation in patients with aggressive multiple sclerosis

http://registration.akm.ch/einsicht....NMASKEN_ID=900

Any wonder the PML case count is 2 in the US and 7 ex-US (Europe)

I agree with Komokazi.

The EU and ROW are much more aggressive. I also believe that they have prescribed Tysabri when the people who want it have no other choices, having tried all other options. There are reports out now that Tysabri will no longer be an option after mitoxantrone according to Tysabri website in Germany.

I also do not like being BIIB's mushroom. I want the information that allows me to make an informed decision. They ain't giving it to me. They are making me search everywhere under the sun for information besides where we SHOULD be getting it from.

I never forget that those of us who are actually ON Tysabri need to be vigilant for ANY adverse events, no matter how small. Changes in thinking, affect, speech, eyesight, etc. are all things we need to watch for.

Correction! The information did not come from Tysabri website. It was from http://chefarztfrau.de/?page_id=418#comment-34516 and was from one of the neuros who answer questions on that board in answer to a question from a patient, dated 16 June 2009

RW -- Do you know anything about the supposed JC virus antibody test that was supposedly going to come out at the end of this year? What help would that offer?

My neurologist has my blood checked every 3 months for the JC/BK viral DNA load. If there is anything funny they will yank you off Tysabri. I know some people who contracted PML did not test positive in their blood until well into the disease course and after clinical symptoms appeared (the best place to look of course is in the CSF) but I guess getting my blood tested is one more possible safety mechanism to put in place. They are making me get an MRI every 6 months too.

I wonder how many people were pulled off Tysabri because of a suspicious blood test or MRI but did not go on to develop PML? Those you would never hear about. Do you think that non-US people get fewer MRI's because of cost, socialized medicine, and long waits and that might also explain the higher PML rate too? Or perhaps it really is prescribing Tysabri on top of past immunosuppressant drug history.

I haven't heard anything further about that specific test lately, but you can be sure that when they do develop a reliable test, they will be trumpeting it everywhere.

It's my doctor's policy that tests will be done on the CSF because it's a much better indicator than blood, so MRI, LP and decision. He also says ANY relapses are suspicious when on Tysabri and that if there is any indication that a patient is starting a relapse he would follow the same procedure.

I've read on other boards about people who were taken off Tysabri due to relapse, increased inflammation or other adverse indications, including blood work.
Some of them weren't happy and some had the attitude that it was better than PML.

I am not sure if socialized medicine would preclude MRIs. I think that any doctor even if overseas would get the MRI approved and done immediately, because of the history of the drug.

There was an abstract at AAN 2009 in April about a bioenergetic assay that had good correlation with immune surveillance status.

How soon any sort of test might be available will depend on confirmation that the test theory works - confirmation in additional PML patients.

Chris

I didn't mean that socialized medicine would stop people from getting MRI's if there was a clinical suspicion of PML. I meant regular MRI's every 6 months like I get even though there is no suspicion--these might catch something earlier.