Hi Linda,

I'm not a subscriber and so can't read the entire article. However, I found the Nasdaq article that the Wall Street Journal seems to have got its information from. I hope it's all right to post excerpts from it here:

http://www.nasdaq.com/aspx/stock-mar...11-as-of-may-6

Thanks agate :hug:
I do know about the informal website and go there daily to see if they have more info on the last cases of pml. So doggone frustrating :(
Linda

Well I'm sitting here getting infusion #21! It's hard to believe it's been almost 2 years. I'm still on the every 8 week cycle and I haven't noticed any difference except maybe the vision in my left eye gets a little blurrier by the end of the 8 weeks. They renovated the infusion room and added new chairs which aren't as comfortable :(. But I'm settled in with my pillow and blanket and looking forward to a nap. I kept the box and look forward to reading the new insert to see what exactly has changed. Hope everyone else is doing well.

The informal website has been updated; 52 pml cases (19 U.S.) and the doses are now posted.
Linda

I am so glad I didn't check in here before my infusion this morning. Seeing the number increasing tends to lead to anxiety before the infusion.

SO, all went well today once they finally got the meds. The did the labs and hooked up the IV and it took them almost 2 hours to get the hospital pharmacy to send up the TY. Apparently there was some mix up and we had to wait for the new shipment to be unloaded from the dock...ugh. anyways, the pharmacy manager came up personally to apologize and she brought me some very pretty peach and red hybrid roses. Which was very nice. They also included lunch with the wait.

Feeling drained as usual, but at least no other yucky symptoms, aside from the blurred vision that showed up in my right eye on the way home. One more to go and we will go in for another MRI to see if it is trying to improve. Kind of funny though, i am on antibiotics to treat the uti from the last infusion.

Hi Linda,
I haven't seen any more than 49 cases mentioned anywhere else. It's entirely possible that the informal Website has information nobody else has, but until I see it in a more mainstream source, I would wonder about those figures.

I had infusion # 39 yesterday, with no problems and no concerns.

It was also my third anniversary since I started Tysabri. I've missed one infusion. Since I started I haven't had a relapse. My MRI showed no new lesions, no enhancing lesions. My doc said I am among the 34% who show no clinical signs of disease activity. I have no signs or symptoms except for the lingering spasticity and fatigue.
My MRI report said that the MRI was "unremarkable". It's the only time I have liked being unremarkable!

The assay is in the works. He says he should have it in hand in 2 weeks. He says that everyone who is tested will have to listen to the informed consent speech, and the informational speech, but that the assay is a simple blood draw and that results will be available in 4-6 weeks and that they WILL be releasing the results to the neurologists. He says that the test has a supposed 2% false negative result at this time and that those who test negative will be retested in six months.

I for one am looking forward to being tested so I can move forward with my choice of treatment. Here's hoping that all of us who are tested come out negative!!

I hope everyone's doing well!!

Hi RW -- That's great news on all fronts. Congrats on #39 and the lesion free MRI's and relapse free life. Unremarkable is wonderful!

So your neuro says he will have the assay in hand in 2 weeks? Does that mean anyone can be tested, even those not participating in any of the trials for the assay? I wrote to my research nurse to ask about it but haven't heard back. If I'm a negative I will stay on it. If I'm positive (or no news) I am heading toward Gilenia (fingolimod).

I am hoping many of us have negative results too. :)

Natalie,
According to my doc he had to apply to be a testing site. He wants to do all his draws on the same day so he can send them all out at the same time, but that is due to costs for shipping, since they have to be shipped according to specs. He applied for all his Tysabri patients. He has a number of people who he monitors, because MS is his specialty and because a lot of other docs send their patients here for infusions, and he takes over when they start as he is the doc associated with this hospital. In addition, we are in a very rural area and for many people this infusion center is the closest to them. I was amazed at the number of people who are being infused here now. I spoke with the nurses while I was there and they said they have grown in numbers over the last few months. He said he will release the results to those who want to know and if the patient doesn't want to know, they will know anyway if they test positive since he will be taking them off Tysabri and steering them towards one of the others drugs available.
I know that if I test positive, I will be off Tysabri. We didn't discuss what would happen after that, whether I would be on a drug holiday or off completely and I don't want to know until the results are in. I prefer to wait and see what comes of the testing.

I suppose i have to start doing homework again on the new drugs. I am not looking forward to that and I figure if I am positive, I'll deal with it then. I want to enjoy my summer without having to read scientific journals and textbooks and studies!!!

I just heard from the research nurse at my MS clinic. They will be doing the antibody assay testing. She is waiting on approvals and as soon as she gets that they will call patients in to give blood. My plan was to drop Tysabri after the next infusion in July (#22), wait a few months until it clears from my system, and then go on Fingolimod (now called Gilenia) which I'm hoping is out by Fall. However, if I test negative on the assay I think I would probably stay on Tysabri. Thank god there are new medications on the horizon, though!!