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Old 03-20-2011, 09:55 PM #1
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Ok so according to the information in that link it is 1.23% out of 1000. That is around the predicted death rate. I guess we need to decide if it is worth the risk to us if we are taking Tysabri. If it worked well for me I might take that risk?
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Old 03-21-2011, 07:36 AM #2
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If I were worse off than I am, or fading fast, I may consider this medicine, but I feel its really severe, and has many risks involved, up to and including death. Copaxone has many risks and side effects as well as the other DMDs, but death isnt usually one of the effects.

As my MS MD said its 1 in 100 for the public, but if YOU are the one that gets it, its 1 in 1. everyone else wont matter. When I first starting seeing them they wouldnt even talk about TY with you. Said it was too dangerous, too unpredicable, and so forth. Then a new MD came into the nest and all of a sudden TY was on the menu. They are reccomending it for those who have failed off 2 DMDs or continue to progress on DMDs. How can they be against it one minute, and cheerleading for it the next? that confused me.
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Old 03-21-2011, 09:03 AM #3
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Quote:
Originally Posted by ewizabeth View Post
Ok so according to the information in that link it is 1.23% out of 1000. That is around the predicted death rate. I guess we need to decide if it is worth the risk to us if we are taking Tysabri. If it worked well for me I might take that risk?
The PML risk rate for 2-3 year users is 2.41/1000. After that there isn't enough data available to establish an accurate risk level.

As always, the final decision whether to use Tysabri should come from the patient after becoming as well informed as possible.

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Old 03-21-2011, 11:10 PM #4
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When I had my last checkup with the neuro he was talking about buying his son a car. He said, if there was a chance that the car I buy would have a 2 in 1000 chance in exploding while he was driving, I would not buy that car for him. He was referring to Tysabri and the associated risks.

I reminded him that Copaxone is working well for me.
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Old 03-22-2011, 11:13 AM #5
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I like your Doc, Wiz!!!
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Old 03-22-2011, 01:21 PM #6
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When I had my last checkup with the neuro he was talking about buying his son a car. He said, if there was a chance that the car I buy would have a 2 in 1000 chance in exploding while he was driving, I would not buy that car for him. He was referring to Tysabri and the associated risks.
Wow....when you say it like that, why are any of us on it??
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Old 03-22-2011, 01:35 PM #7
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Wow....when you say it like that, why are any of us on it??
Peeps like Riverwild, are doing extremely well on it, with little or no side effects and are still testing negative for the JV virus. However she is one of the very lucky few.
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Old 03-22-2011, 08:53 PM #8
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There are many folks who cannot tolerate the other meds. If it worked well for me I would feel like they do.

It is risky but if it works and your QOL is at stake, I can completely understand those who choose to stay on Tysabri.
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Old 03-22-2011, 08:58 PM #9
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To put this in perspective:
http://www.nsc.org/NSC%20Picture%20L...y_Facts_37.pdf

Cancer:1 in 7
Stroke:1 in 28
MVA: 1 in 88
Intentional self harm:1 in 112
Accidental poisoning by exposure to noxious substances:1 in 130
Falls:1 in 171
Car occupant:1 in 303
Assault by fiearm:1 in 306
Pedestrian:1 in 549
Motorcycle rider:1 in 770...

and my favorite: 1 in 1 from any cause

Now you can say that the population as a whole is the control number but if you take care of yourself, make sure you are screened for the various diseases, don't walk against the light at crossings, etc, that you cut your risk. For me, it's the same with Tysabri. It's perceived risk and when you do what you are supposed to do, and pay attention and report any signs or symptoms that you have, your odds of dying decrease.

I'm a firm believer in the right to choose, whether it's my healthcare, my president, my lifestyle or my financial style. I don't expect to be rescued when I run whitewater, I learned how to do that myself and if I die that way, it's my choice to participate in that risk and I have decided to die laughing, because for sure, one day I am going to die, regardless of how I go.
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I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
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Tysabri returned to market 06/05/06
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Old 03-22-2011, 09:05 PM #10
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Spoken like a true daredevil, EvilRiver..
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