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12-17-2008, 12:40 PM | #761 | |||
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Elder
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Quote:
I get my 21st infusion on Friday.
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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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12-17-2008, 01:45 PM | #762 | ||
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Member
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Quote:
You are certainly correct in saying we'll find out more as time goes on...I just wish that I could put more trust in what Biogen tells us about this drug. Their reputation in the world of MS medicine isn't all that good! Take care. Harry |
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12-18-2008, 03:23 PM | #763 | |||
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Member
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Now this is very interesting speculation as to why Tysabri may cause PML in the brain.
http://www.reuters.com/article/healt...4BF5GF20081216
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On Tysabri and love it. . |
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12-18-2008, 04:09 PM | #764 | |||
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Member
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Here is an even better article on the subject from the researcher's home institution. An article this month in the Archives of Neurology addresses the reduction of brain immunity in people on Tysabri.
http://www8.utsouthwestern.edu/utsw/...es/505840.html
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On Tysabri and love it. . |
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12-18-2008, 10:01 PM | #765 | |||
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In Remembrance
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All, excellent publications, Natalie.. To Spite what Biogen thinks, the MS world knows how important it is, to keep Patients informed.....not frightened but informed.
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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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12-18-2008, 11:57 PM | #766 | ||
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Member
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Quote:
Harry |
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12-19-2008, 12:30 AM | #767 | |||
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Elder
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Harry,
So, do we not offer drugs that have a chance of bad side effects? Don't we have to look at the overall effect? Let the patients know of any possible adverse affects and let them decide for themselves? Would you rather we not have Tysabri available as a treatment? For myself, it has given me back a lot of my quality of life. All of these heavy duty drugs have their chances of dangerous side effects. If I take too much aspirin I might bleed to death. So what do we do Harry? Take the Tysabri away? (And you know I'm not baiting you, I respect you as the caring spouse of someone with MS, your dear late wife.) Just trying to let you see the side of the patient that relies 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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12-19-2008, 12:32 AM | #768 | |||
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In Remembrance
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Yes, Harry, Biogen stinks.., but the truth is that, Ty is helping a whole lot of people to hold back the progression of MS.
The question has always been and will always be, do we want to take the chance with Tysabri and other dangerous drugs to slow the progression of MS? Some Docs and their Patients say no and some say yes. I only ask that they keep us informed, so that our decisions are based on truth and not hype. How are you doing, Harry..
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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~ Last edited by SallyC; 12-19-2008 at 11:18 AM. |
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12-19-2008, 06:46 AM | #769 | |||
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Wisest Elder Ever
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I agree with Wiz and Sally.....provide the patient with all the information (good and bad) and let them make the decision as to whether or not they want to use that particular therapy.
Everyone's chemical makeup is different....what may cause a bad reaction in me may not cause it in someone else. It's a calculated risk we all take with everything we put into our bodies. Even things as relatively safe as aspirin and Tylenol.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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12-19-2008, 10:14 AM | #770 | |||
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Magnate
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Biogen-Idec reported yesterday that the US patient who was reported to have PML on Oct. 29, 2008 has died.
The death was likely as a result of IRIS from PLEX and treatment for PML. This is the patient who was 49 yrs old, female, previously treated with Copaxone,Beta-interferons and methotrexate for RA. She had received 14 infusions of Tysabri. Her last methotrexate treatment was 4 months before starting Tysabri. It is unknown when she was last treated with interferons and Copaxone. More information as and if it becomes available. Since this patient lives in the USA, there may be no further information available due to the HIPAA laws.
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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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