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Old 02-08-2009, 05:31 AM #1
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My concerns with the Tysabri were that my neurologist would only contact me after I had called in with concerns about learning of newer pml cases.... It's such a tough call on what to do. I always hear it from the media first,
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Old 02-10-2009, 05:16 PM #2
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Default Hi everyone

I just wanted to say a quick hello. I just joined the boards. Since I'm on Tysabri, every few months I do a quick search to see if there have been any new PML cases, and today when I did the search, it brought me here. While the latest case announced last week isn't going to push me to stop taking Tysabri, I would like to be prepared and determine for myself what level of risk I am willing to take. I've been on Tysabri for 14 of the past 17 months. My doc put me on a 3 month holiday after 12 months.

So has anyone come up with your own statistical breaking point? How are you factoring in the potential increased risk for PML over time? Based on that pdf file link someone posted, it looks like there are 5 post-marketing cases and 20,000 who have been on it over 12 months. 1 in 4,000 is still a super low risk in my mind, but at what number does the FDA pull the drug? Is it 1 in 1,000?

Life is normal for me on Tysabri and I'd sure like to keep it that way.
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Old 02-10-2009, 07:03 PM #3
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My neuro stated (and he does seminars for Tysabri) that their acceptable risk is 7:1000, so I don't think the company would start pulling patients off the drug unless there was a huge outbreak of PML.

Personally, as long as I feel good, I'll stay on it until something better/easier comes along. Mostly the better part! That is how I handled the interferons. I just want to stay the way I am today, and I feel Ty is the best med out there now for that prognosis IMHO!
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