Well I saw the neuro today to decide about staying on Tysabri or going on Gilenya. I learned some interesting things. I will post the Gilenya info in the gilenya/fingolimod thread. First, the JC antibody assay test is now available as part of the clinical trial at my clinic. But my neuro is not certain it is worth doing right now. He has some issues with the test itself and how "specific" it is (ensuring everyone who tests negative really doesn't have the JC virus). The discussion about his fear that the test is not 100% accurate (meaning no false negatives ever) was pretty scientific/statistical because he also has an MA in epidemiology as well, so I won't recount it.
See this website for more info if you can even understand it.
http://www.aan.com/elibrary/neurolog...01010070-00009

Apparently he has been talking with Biogen about the possibilities of false negatives. Until they work the kinks out and put the test on the market (Biogen told him they estimate 6 months) he thinks it won't help patients much right now with making decisions about risk or necessarily helping reduce anxiety. He did tell me I can enter the stratify trial and the researchers will tell me what my test results are. But he is not totally certain about its usefulness right now. I took him at his word because I think he is brilliant and decided not to get tested. If it's negative there is no guarentee that it is accurate and if it's positive I still may never get PML but I have caused myself a LOT of anxiety and fear for the next few months.

I decided I will get an infusion in Dec., then one in Feb., then possibly in April. That pushes me into June (since I get it every 8 weeks). By then the official Biogen test will be out hopefully and more people will have been on Gilenya and/or switched over from Tysabri to Gilenya and we will have more info on the drug. I'm just not sure I'm ready for Gilenya quite yet and think I will keep on with the PML risk for a bit longer.

He told me that neuros don't all agree on this next item, but in his mind even though I've only had 24 infusions he considers time on drug not number of infusions as the marker of true risk. So in his mind I've been on it 2 1/2 years. That was slightly nervewracking which means theoretically my risk is greater than I thought. So why not keep on for a bit longer if I've already crossed that "2 year" threshold.

I posted something recently about the experimental drugs used in that one case of PML. Apparently it was in my home state and my neuro consulted on the case. He said the drugs worked well and if a patient of his gets PML he will use that protocol.

Okay, after this long and potentially confusing post what this all means is I am staying in the Tysabri club a little bit longer.