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Old 10-29-2009, 05:23 PM #11
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Natalie8 Natalie8 is offline
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Natalie8 Natalie8 is offline
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So I just got off the phone with my neurologist and got some useful information. She listened to the conference call last night that Biogen did with the neurologists. Here is what I found out.

8 out of the 24 cases have been in the U.S.
60% of the patients taking Tysabri are from the U.S.
4 deaths from PML out of the 24.
64,000 are currently on Tysabri (she said this is what Biogen told them but everything I've seen in other articles says roughly 46,000--so this was confusing even though I asked her if she was sure). Take this number with a grain of salt. Maybe she flipped the digits in her mind.

It's not clear how long the EMEA had the information about the PML cases which they got from Biogen. The FDA could have had the info but the EMEA decided it would go public last Friday. She said, clearly something different is going on in Europe in terms of cases.

As far as her opinion, she essentially said that we are in a wait and see pattern because there just isn't a lot of clinical information/evidence out there. She said she and her fellow neurologists are on top of things -- as a larger community they may have to decide how to proceed--holidays, how long people should be on it, who should be on it-- as more info comes to light as time goes on. She also noted that Biogen is a business so we don't even know if we are getting all info--profits drive Biogen obviously. We don't have much clinical data on the Tysabri holiday idea (how long should you be on the holiday, who should go on it etc.) However, she said that studies show MS activity seems to come back in 6 months when you go off Tysabri. It takes 3 months for the drug to get out of your body. So if she recommended a holiday it would be for 4-5 months (splitting the difference). She initially was against holidays because of the antibody issue. Now she is saying that for someone like me (who didn't have very active or aggressive MS when I started Tysabri) I should consider a holiday. But I'm on #17 and we will reassess at the 24 month mark. She also mentioned that she thought the antibody issue would be less of a problem if you had been on Tysabri for awhile (not a short time 2-4 months) and then go back.

There is more but I can't remember it all right now -- If I remember more I'll post it! There still seems to be a lot of "we just don't know" answers. I feel like I did when I found out I had MS and was asking a million questions about the disease-- "we just don't know."
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