As a follow-up to my earlier post on Elan/Biogen providing monthly PML (and usage) reports, a little birdie told me that there have been 28 PML confirmed cases as of Nov 30th, 2009.

Best Practice Tysabri Treatment recommendations
 

http://pharmalive.com/News/index.cfm...categoryid=10#

Panel of multiple sclerosis experts provides best practice treatment recommendations for Tysabri.

Dec. 4, 2009-Best-practice recommendations for the selection and management of patients with multiple sclerosis (MS) who may benefit from, or are receiving treatment with TYSABRI® (natalizumab) were published today in a supplement to the medical journal Multiple Sclerosis. The panel provided recommendations focusing on appropriate patient selection and patient management. The recommendations, which recognize the significant efficacy of TYSABRI and the need to adequately treat patients who exhibit continued disease activity, are based on U.S. prescribing information and the panel's vast clinical experience in treating MS patients with TYSABRI. Recommendations not only take into account the need to adequately treat patients who exhibit continued disease activity, but also the need to weigh the treatment's benefit with potential risks...

I also found an update on the German recommendations for Tysabri treatment to mitigate risk, but I don't have the link at hand. I'll drop it in here when I get the chance. I've got a lot more stuff that I've picked up over the past two weeks but I have to organize before I can get it out here!

It's been very quiet in here. I hope everyone's doing well and that you're all ready for whatever your holiday plans are! :grouphug:

River,

Thanks for the link. Good info but likely subject to significant change once the JC Virus Antibody assay is rolled out in the near future.


Chris

Interesting link from an investment analyst - Page 2 talks about the JC Virus Antibody Assay and potential use of the ImmunKnow Assay for JC Virus Antibody positive patients

http://www.canaan.com/downloads/news...(11-30-09).pdf

I am so annoyed that we still cannot get info on new cases of pml. I, too, found that there are now 28 cases. I have again called Active Source to be told FDA has new case info-to have them tell me the company has that info :mad: I love being bounced around. I was also told by FDA rep that I can write to Freedom of Information Act... I will but I am so frustrated/cynical right now I have already decided "IF" I get any info it will probably be to tell me the # of pml cases and NOTHING else and then do I get the pleasure of writing them each month.

Has anybody's Dr been able to get/give any info ?

Linda

Biogen/Elan have stated that they intend to provide monthly updates to docs. I've got ways of accessing this update and will post updates of confirmed PML case counts when they are available.

Probably better to focus on the PML mitigation methods they will be rolling out in the near future as these will be more applicable in indicating a given patient's risk.

May be Mad at Biogen but love my Tysabri !
 

Just got home from #41 :D and baked 7 doz cookies in my HOT kitchen!!!

Going in for #2 tomorrow....so how many of these blown veins do I have to deal with before I start feeling better?:confused:

Now that is awesome news!! Congrats on #41!!! What kind of cookies did you bake? Anything with chocolate? :)

Congrats on # 41 Linda!
I'll take any flavor cookie you are passing around! :)

Leggz- ask the nurse to use your cephalic vein the next time you go in. Most nurses insist on using a hand vein but I only use the cephalic vein that runs along the side of the wrist, usually have them hit it on the forearm before the wristbone. It's a big fat vein and hard to blow unless they forget to take the tourniquet off!

I'm scheduled for # 34 Thursday!