Biogen and reporting on Tysabri numbers-
NEW YORK (Dow Jones)--Biogen Idec Inc. (BIIB) will communicate with doctors once a month on the occurrence of new cases of a rare brain infection in patients using its multiple sclerosis treatment Tysabri, as the biotech strives to find the right balance in keeping the medical and financial communities updated on that important number...

I think we played a part in educating Biogen on this one! The article I have is for subscribers only. Drop me a PM for the full article.

There's also this thread:

http://neurotalk.psychcentral.com/thread106605.html

I had infusion #19 today (after an 8 week break). The slowed down infusion (2 hours instead of 1) is still the way to go for me. I am having relatively few side effects from my infusion which is nice. My eyesight went back to being really crystal clear sharp again!! Strange, huh? It had started to blur up a little over the 8 week break. Anyhow, if I don't get a UTI this time we may go to 6 weeks in between infusions. I'm not sure I want to go back to every 4 weeks for fear of PML and UTI's. It's all still play it by ear.....

That's great news about your vision, Natalie! It's nice that they're willing to be flexible about giving you breaks from the infusions as needed.

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There is an article in Motley Fool telling how to get PML updates:

http://www.fool.com/investing/high-g...do-is-ask.aspx

It seems that ordinary people (non-MDs) will have to ask for the PML updates every month from Biogen's investor relations department.

Glad to hear it went well, Natalie!
I noted some lessening of muscle control of my eye when I had the break due to appendectomy last year, along with blurring. It just proved to me yet again that Tysabri actually has a beneficial effect on symptoms for me!

Thursday is #35 for me.

Good luck with #35 RW!! Very interesting that you also noticed eye issues with your Tysabri break. My neuro told me Ty. was particularly helpful for cognitive, eye, fatigue problems which is why she recommended it. I hate to mess with the vision which is why I go back and forth about what to do as I near the #24 mark.

Actually, I had a delay in Ty. side effects from the infusion. Later last night I felt very achy, nauseous and spaced out to the point of messing up words. But I've had this happen before and know it goes a way in a couple of days.

Natalie, sorry to hear you were feeling rather lousy after infusion I am so fortunate that I do so well with my infusions. Tomorrow will be 42 for me

RW, hope all went well today

Anyone see their neuro... get any Ty/pml info?

Linda

# 35 down and done with the usual no problems and no concerns.

The only new info I have until I see the doc next month for the news from the KOL Conference is from Pit. His chart notes 33 PML cases with the last two unconfirmed as of yet, which is the same number I have. I'll post when Biogen opens their sticky fingers tomorrow and confirms the last two via their investor relations department. The bad part of the new cases is that they all are up there on their doses, ranging from 37 to 52 doses. The US leads now with 11 cases, one more than Germany.

http://chefarztfrau.de/?page_id=716

OTOH, Tysabri has now reached what the pharma business refers to as "blockbuster" status, with a billion dollars in sales in 2009.

I for one look forward to the assay and a vaccine in the future, cause after 5+ years I am growing weary of working to separate truth from rumor. Biogen's open and honest communication truly needs more work, regardless of the steps they have taken to appease us in the past few months.