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Tysabri and PML: Call and complain to Biogen.

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Old 10-31-2009, 08:36 PM #41
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my older neuro said STAY AWAY! he said I am not nearly ready for such a drastic step, and suspects that several neuro's in the surrounding area are being given "incentives" to move more clients over. nice vacations, perks, bonus items, like flat screens, and such in the office have appeared with the Ty name of the biogen lable on them. Pens and trinkets everywhere lately. Makes me wonder. IF i ever need to go on Ty, I certainly will, but I believe if I say no thank you, that should be the end of it. Money money money. I even got the lecture that it would stop coming off my montly pharmacy bill, and placed on my medical plan since its done at an infusion center! woo! Good grief. Lets take a drug that can do wonderful things, and taint it with dirty pool.
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Old 11-01-2009, 01:55 PM #42
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I asked my neuro if I could possibly have an infusion every 8 weeks instead of every 4 weeks. She said she doubts my insurance will pay for it that way

I'm still weak from missing so many infusions this past summer. I've had 2 infusions since then and I am a bit better but I can still tell the difference. My neuro suggested I stay on Ty a little longer while she tries to get more info for me. She said that since I know the risks and the signs of PML and since my QOL was so poor before I started Ty she thinks I should wait a little longer for more info before I stop permanently. She has told me there are several new meds on the horizon.
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Old 11-19-2009, 02:27 PM #43
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http://blogs.wsj.com/health/2009/11/11/when-rival-drug-makers-compare-notes-on-safety-problems/tab/comments/

There are several Wall Street Journal articles about Tysabri and Biogen if you go there and search. You can also leave comments.
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Old 11-19-2009, 07:36 PM #44
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Looks like 3 more confirmed cases of PML!

http://www.msrc.co.uk/index.cfm?fuse...ow&pageid=1905

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Old 01-11-2010, 02:07 AM #45
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It seems Biogen Idec has decided to resume posting monthly reports on Tysabri-related PML cases, at least according to this in the Irish Examiner, January 8:

http://www.irishexaminer.com/busines...#ixzz0cGKdOR4q

Supposedly there will be a December report some time this month.

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Old 01-16-2010, 01:19 PM #46
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Unfortunately the reports may be available only to doctors, or at least that's what I'm getting from this:

Quote:
Biogen Idec says it plans to offer monthly updates to physicians about the latest statistics on PML cases, and infection rates. It will also staff a hotline for physicians who want to gather detailed, updated information and context from the company’s medical staff. The company plans to lay out the numbers in a more detailed fashion, with rates on incidence of infection, numbers showing how long certain groups of patients have been on the drug, combined with data on how many total patients are receiving treatment.
From Xconomy.com, http://www.xconomy.com/boston/2010/0...ngle_page=true
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