Well it's somewhat official, at least for now--I'm going to every other month Tysabri. I talked to the research nurse at my MS clinic today. She deals with the clinical trials that the med. school sets up, including an original Tysabri trial she participated in. I got some useful info. And she gave me her direct line phone number which is cool since not everyone gets it!

According to the nurse they have at least 10 patients (maybe more) they have put on Ty. every other month because of chronic UTI's, vaginal infections, or respiratory infections. In addition, there is one patient who lives in Costa Rica, and a few others who can only make it to the clinic every other month and get their Ty. that way too. She said that none of them have had breakthrough disease activity with the MS on the every other month plan. But there are still many unknowns. She said Biogen had to "choose" an amount and regular schedule for Tysabri (300 mg. every month) but why they chose what they did is not completely known. My med. school is working on creating some clinical trials to do alternative dosing with Tysabri (what happens if you give it every other month, what happens if you give a half a dose every month etc. etc.). There is a PhD researcher at the school who is studying Tysabri and PML as well and they meet every week to discuss the drug and PML.

She also told me that my clinic has been sending blood samples of new Tysabri patients to the NIH for the past year and a half. The NIH is testing the blood to see if there are immunologic changes along the way that might give them some idea as to who is at risk for PML. They are also looking for information on how to create a vaccine for JC virus. When she mentioned the possibility of a vaccine she described it as 5-10 years down the road. Doesn't sound promising for something right away. Other testing sites have been sending the NIH blood too. The NIH won't tell the clinics the details except that the NIH said they have found some surprising and interesting stuff that is useful for studying the JC virus. I guess the NIH is being tight-lipped about it all--I'm only guessing but I imagine that researchers feel very protective of what they find for publication reasons among other things.

I asked about the assay that would test for JC virus antibodies that we've heard about from Biogen--the business newspapers/magazines have been saying it would come out in the first or second quarter of 2010. She didn't have much to say about that except that Biogen is very protective of what they have discovered because they want to come out with and market the test before anyone else. It made me realize that the information that Biogen slips to the investors (hey, we have this antibody test that is coming out in 3 months!) may not always be accurate--they are trying to insure their stock prices stay high so why wouldn't they be overly optimistic about everything? It's all about the $$$. The problem is they give info to the investors that is probably more on the rosy side and they give even less to the patients!! But now that I have this nurse's phone # I feel like I have a resource I can call if I want the most up to date info on the drug. Even my own neuro has talked badly about the drug companies! And wow, I just remembered that the doctor I saw at the Mayo Clinic really trashed the drug companies b/c the Mayo Clinic takes no money from pharmaceutical companies--it's against their style of practicing medicine for the sake of medicine, nothing else.