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06-19-2009, 11:35 PM | #1 | |||
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Grand Magnate
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3 from the trials + 9 cases confirmed in the last <11 months.
http://investor.biogenidec.com/phoen...82&p=irol-TPME June 19, 2009, 34 doses, Ex-US July 24/09 (when they are no longer going to be posting the cases publically on their website), is coming too soon though ... Not sure how we'll know about new cases then. Cherie
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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06-20-2009, 08:08 AM | #2 | |||
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Elder
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we need transparency. I want honest figures about what is really going on with the brave folks that sit in that chair once a month. they are the soldiers that we are all looking towards for the long term results with this drug.
I want drugs that are more effective than the standard CRAB drugs, but when they start making things secret, it appears as if they have something to hide. That scares me. When you sign on with Touch to take this stuff, you KNOW there are risks, and benefits. I dont understand what the issue is with being honest and up front. Thanks for bringing this to our attention. God Bless those who do the research for us. I simply cant dig through every journal, article, and website looking for evidence.
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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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06-20-2009, 09:51 AM | #3 | |||
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In Remembrance
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Dej, probably with every PML case announced, I'm guessing, there are a 1000 people who either drop out or don't sign up.
With Biogen, it's all about the bottom line... But, on the other hand, at least they came up with something that works a lot of the time.
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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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06-20-2009, 10:05 AM | #4 | |||
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Wisest Elder Ever
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It's all about the almighty dollar.
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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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06-20-2009, 12:24 PM | #5 | ||
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Member
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To keep the PML discussion in perspective:
European Doctors are not exactly shying away from using Tysabri in immunnosuppressed patients (which is identified as a potential risk factor for higher occurrence of PML) Natalizumab treatment after autologous haematopoietic stem cell transplantation in patients with aggressive multiple sclerosis http://registration.akm.ch/einsicht....NMASKEN_ID=900 Any wonder the PML case count is 2 in the US and 7 ex-US (Europe) |
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06-20-2009, 02:59 PM | #6 | |||
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Magnate
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I agree with Komokazi.
The EU and ROW are much more aggressive. I also believe that they have prescribed Tysabri when the people who want it have no other choices, having tried all other options. There are reports out now that Tysabri will no longer be an option after mitoxantrone according to Tysabri website in Germany. I also do not like being BIIB's mushroom. I want the information that allows me to make an informed decision. They ain't giving it to me. They are making me search everywhere under the sun for information besides where we SHOULD be getting it from. I never forget that those of us who are actually ON Tysabri need to be vigilant for ANY adverse events, no matter how small. Changes in thinking, affect, speech, eyesight, etc. are all things we need to watch for. Correction! The information did not come from Tysabri website. It was from http://chefarztfrau.de/?page_id=418#comment-34516 and was from one of the neuros who answer questions on that board in answer to a question from a patient, dated 16 June 2009
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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! . Last edited by Riverwild; 06-20-2009 at 03:39 PM. Reason: see above |
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"Thanks for this!" says: |
06-21-2009, 03:21 PM | #7 | |||
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Grand Magnate
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Quote:
It seems they should have patterns established by July 24th though... since they see that as the reason to no longer supply this PML incident information to patients ... then those who are at more risk can weigh up their decision on that basis. Quote:
If immunosuppression is a potential risk factor though, can you link to a definition of how long people are supposed to wait/dependant on what drug, before going on Tysabri, Chris? I haven't (personally) seen that criteria detailed even for US patients yet. It was just a small study, but it is interesting that the results show that THOSE strong immunosuppressants didn't seem to affect the outcome. I hope they are undergoing bigger (and longer) studies, that might give them more conclusive evidence that immunsuppression either does or doesn't influence the development of PML. Maybe they are waiting on those results as we speak, and that this may be why they think they are getting closer to answers ... Cherie
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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