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#1 | |||
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Elder
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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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Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 |
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"Thanks for this!" says: | Dejibo (03-21-2011) |
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#2 | |||
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Elder
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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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RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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#3 | ||
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Member
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Quote:
As always, the final decision whether to use Tysabri should come from the patient after becoming as well informed as possible. Harry |
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#4 | |||
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Elder
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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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Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 |
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#5 | |||
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In Remembrance
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I like your Doc, Wiz!!!
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#6 | ||
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Member
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Quote:
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Dx: RRMS Jan 2010; LDN: March 2010-Dec 2010; Aug 2012-Nov 2012 Tysabri: Feb 2011-March 2011 reaction Gilenya: August 2011 reaction Copaxone: October 2011 reaction Tecfidera: May 2013 reaction |
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#7 | |||
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In Remembrance
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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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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#8 | |||
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Elder
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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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Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 |
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#9 | |||
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Magnate
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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 know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . 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 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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#10 | |||
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In Remembrance
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Spoken like a true daredevil, EvilRiver..
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__________________
~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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