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Old 12-16-2009, 01:12 PM #381
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As a follow-up to my earlier post on Elan/Biogen providing monthly PML (and usage) reports, a little birdie told me that there have been 28 PML confirmed cases as of Nov 30th, 2009.
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Old 12-21-2009, 08:10 PM #382
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Default Best Practice Tysabri Treatment recommendations

http://pharmalive.com/News/index.cfm...categoryid=10#

Panel of multiple sclerosis experts provides best practice treatment recommendations for Tysabri.

Dec. 4, 2009-Best-practice recommendations for the selection and management of patients with multiple sclerosis (MS) who may benefit from, or are receiving treatment with TYSABRI® (natalizumab) were published today in a supplement to the medical journal Multiple Sclerosis. The panel provided recommendations focusing on appropriate patient selection and patient management. The recommendations, which recognize the significant efficacy of TYSABRI and the need to adequately treat patients who exhibit continued disease activity, are based on U.S. prescribing information and the panel's vast clinical experience in treating MS patients with TYSABRI. Recommendations not only take into account the need to adequately treat patients who exhibit continued disease activity, but also the need to weigh the treatment's benefit with potential risks...

I also found an update on the German recommendations for Tysabri treatment to mitigate risk, but I don't have the link at hand. I'll drop it in here when I get the chance. I've got a lot more stuff that I've picked up over the past two weeks but I have to organize before I can get it out here!

It's been very quiet in here. I hope everyone's doing well and that you're all ready for whatever your holiday plans are!
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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Tysabri withdrawn from market 02/28/05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
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Negative for JC virus antibodies!
.

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Old 12-22-2009, 09:28 AM #383
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Quote:
Originally Posted by Riverwild View Post
http://pharmalive.com/News/index.cfm...categoryid=10#

Panel of multiple sclerosis experts provides best practice treatment recommendations for Tysabri.

Dec. 4, 2009-Best-practice recommendations for the selection and management of patients with multiple sclerosis (MS) who may benefit from, or are receiving treatment with TYSABRI® (natalizumab) were published today in a supplement to the medical journal Multiple Sclerosis. The panel provided recommendations focusing on appropriate patient selection and patient management. The recommendations, which recognize the significant efficacy of TYSABRI and the need to adequately treat patients who exhibit continued disease activity, are based on U.S. prescribing information and the panel's vast clinical experience in treating MS patients with TYSABRI. Recommendations not only take into account the need to adequately treat patients who exhibit continued disease activity, but also the need to weigh the treatment's benefit with potential risks...

It's been very quiet in here. I hope everyone's doing well and that you're all ready for whatever your holiday plans are!
River,

Thanks for the link. Good info but likely subject to significant change once the JC Virus Antibody assay is rolled out in the near future.


Chris
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Old 12-23-2009, 10:34 AM #384
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Interesting link from an investment analyst - Page 2 talks about the JC Virus Antibody Assay and potential use of the ImmunKnow Assay for JC Virus Antibody positive patients

http://www.canaan.com/downloads/news...(11-30-09).pdf
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Old 12-23-2009, 12:59 PM #385
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I am so annoyed that we still cannot get info on new cases of pml. I, too, found that there are now 28 cases. I have again called Active Source to be told FDA has new case info-to have them tell me the company has that info I love being bounced around. I was also told by FDA rep that I can write to Freedom of Information Act... I will but I am so frustrated/cynical right now I have already decided "IF" I get any info it will probably be to tell me the # of pml cases and NOTHING else and then do I get the pleasure of writing them each month.

Has anybody's Dr been able to get/give any info ?

Linda
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Old 12-23-2009, 01:34 PM #386
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Originally Posted by Grammie 2 3 View Post
I am so annoyed that we still cannot get info on new cases of pml. I, too, found that there are now 28 cases. I have again called Active Source to be told FDA has new case info-to have them tell me the company has that info I love being bounced around. I was also told by FDA rep that I can write to Freedom of Information Act... I will but I am so frustrated/cynical right now I have already decided "IF" I get any info it will probably be to tell me the # of pml cases and NOTHING else and then do I get the pleasure of writing them each month.

Has anybody's Dr been able to get/give any info ?

Linda
Biogen/Elan have stated that they intend to provide monthly updates to docs. I've got ways of accessing this update and will post updates of confirmed PML case counts when they are available.

Probably better to focus on the PML mitigation methods they will be rolling out in the near future as these will be more applicable in indicating a given patient's risk.
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Old 12-28-2009, 07:24 PM #387
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Default May be Mad at Biogen but love my Tysabri !

Just got home from #41 and baked 7 doz cookies in my HOT kitchen!!!
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Old 12-28-2009, 09:18 PM #388
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Going in for #2 tomorrow....so how many of these blown veins do I have to deal with before I start feeling better?
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Old 12-29-2009, 02:44 AM #389
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Quote:
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Just got home from #41 and baked 7 doz cookies in my HOT kitchen!!!
Now that is awesome news!! Congrats on #41!!! What kind of cookies did you bake? Anything with chocolate?
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Old 12-29-2009, 07:25 AM #390
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Congrats on # 41 Linda!
I'll take any flavor cookie you are passing around!

Leggz- ask the nurse to use your cephalic vein the next time you go in. Most nurses insist on using a hand vein but I only use the cephalic vein that runs along the side of the wrist, usually have them hit it on the forearm before the wristbone. It's a big fat vein and hard to blow unless they forget to take the tourniquet off!

I'm scheduled for # 34 Thursday!
__________________
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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