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#191 | ||
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Junior Member
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Grammie 2 3, plenary means comprehensive.....including all or everything....on a subject. I hope that helps a bit
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"Thanks for this!" says: | Grammie 2 3 (09-16-2009), Riverwild (09-16-2009) |
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#192 | ||
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Member
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Quote:
I e-mailed the NIH (Dr Major's ofice (NEJM commentary) to ask about his 12 PML case article verus the Dow Jones 13 PML case article - Is Dow Jones incorrect? Will post what I find out. Chris |
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"Thanks for this!" says: | ewizabeth (09-15-2009), Grammie 2 3 (09-16-2009), Natalie8 (09-17-2009), PolarExpress (09-15-2009), Riverwild (09-15-2009) |
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#193 | ||
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Member
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Shayna, thank you
![]() Chris you have now, along with Riverwild, become my hero !! I so appreciate how informed you are and how you try to keep us informed ![]() Thank you ![]() Linda |
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#194 | ||
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Member
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Reiterated no changes to the label.
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"Thanks for this!" says: |
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#195 | |||
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Magnate
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More on the FDA Update:
http://www.fda.gov/Drugs/DrugSafety/.../ucm107198.htm The FDA continues to receive reports of progressive multifocal leukoencephalopathy (PML) in patients receiving Tysabri. Tysabri was approved by the FDA for the treatment of relapsing forms of multiple sclerosis (MS) in November 2004 and for moderately to severely active Crohn’s disease in January 2008. From July 2006, (when Tysabri marketing resumed) to September 8, 2009, 13 reported cases of Tysabri-related PML were confirmed worldwide in patients being treated for MS with Tysabri monotherapy. Of these, four cases were patients in the United States (U.S.). There have been no postmarketing reports of PML in patients treated with Tysabri for Crohn’s disease. Less than 2% of Tysabri use in the U.S. has been in patients with Crohn's disease.
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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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"Thanks for this!" says: |
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#196 | |||
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Member
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I wonder why no one being treated for Crohns disease has gotten PML. Maybe the numbers are just lower in terms of total taking drug? I see my neurologist tomorrow. I have plenty of questions to ask about Ty and PML. I'll let you know what I find out. I'm curious to know what she thinks of the CCSVI theory. Enjoy the day!
![]() RW: Thanks for the extremely useful information. I guess the aren't willing to or can't speculate on the risk above 24 months? What do you think?
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On Tysabri and love it. . |
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"Thanks for this!" says: |
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#197 | ||
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Member
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Quote:
He had been involved in the Tysabri clinical trials with Crohn's but was on the placebo. Months later, he was given the actual drug and within 6 infusions, became very sick and died quickly. His initial cause of death was attributed to a brain tumour but subsequent investigation changed that to PML. Biogen stated that he got PML because he had taken two different kinds of immusuppressants prior to using Tysabri but his family stated that those drugs had been stopped 8 months earlier and the patient was in good health other than from the symptoms of Crohn's. I'm not sure if there is any other recorded incident of PML with Crohn's patients using Tysabri since that time. Harry |
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#198 | |||
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Member
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Harry, that case I am aware of. I should have been more specific and noted I was asking about cases that occured post clinical trials. I just assumed from the content of the article it was clear what we were talking about. Thanks anyway.
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On Tysabri and love it. . |
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"Thanks for this!" says: | Riverwild (09-22-2009) |
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#199 | |||
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Magnate
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Quote:
![]() I think that I heard that Elan dismissed their Crohn's sales team. I do know that a lot of the gastro docs/rheumatologists are as conservative as a lot of neuros are. In addition, many docs move to stronger drugs and a lot of those drugs may be contraindicated before Tysabri. They may feel the risk is not worth it when it comes to prescribing Tysabri. We may see more Tysabri use sooner (before stronger drugs used for Crohn's are used) as younger docs come up through the ranks. I also think that as with any new drug, a lot of docs wait to see what happens with others using the new drugs before they prescribe. I don't hear much news on Crohns disease and use of Tysabri, but I am not usually looking for it either. I am sure that it's out there, maybe they aren't as vocal as we are? ![]() As far as the speculation on the risk above 24 months use, I believe they use data from studies being conducted on people who are enrolled in the STRATA and the TYGRIS trials, which follows people on Tysabri for MS. I didn't join the STRATA or TYGRIS trials because it wasn't offered to me, I think it had to do with where you go for treatment and I am in a very rural area without the researchers available, and there were certain requirements that had to be met to be in the trials. Hope everyone is doing well! ![]() I am as usual-working too much and trying to get ready for winter before it gets here to Maine!
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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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#200 | |||
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Magnate
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I had my first Tysabri infusion yesterday with no side effects, except that I did get a slight headache and upset stomach yesterday evening. Seltzer and Tylenol did the trick.
I signed up for the TYGRIS study. This is so exciting! I am thinking many positive thoughts! ![]()
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Mair . |
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