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Old 04-17-2009, 01:01 AM #1
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Arrow Tysabri Information and Check In part 2

Part two, resume your conversation.
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RRMS DX 01/28/03 Started Copaxone again on 12/09/09
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Old 04-17-2009, 08:06 AM #2
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Wheeeee!

We've come a LONG way!

Onwards and Upwards!

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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?


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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Tysabri withdrawn from market 02/28/05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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I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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Old 04-18-2009, 07:26 AM #3
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Biogen reports another case of PML.

http://investor.biogenidec.com/phoen...82&p=irol-TPME

Click on view PDF.

31 infusions, not in US (ex US)

I haven't found any further info yet. I'll post when I know more.
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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Tysabri withdrawn from market 02/28/05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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Old 04-18-2009, 09:52 PM #4
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o and polar, i am calling you right after school on monday to hear all about it! i hope it goes well! love you!
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Old 04-19-2009, 07:38 AM #5
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Default Latest PML case probably another German patient making them 4 of the 6 cases reported

Update from German blog of the husband of the Feb 10 PML case


Pit:, 02:30 ..am, (( for newbies: Pit`s wife is one of the pml cases - Feb 09 - ))

"Hello all,
Since the 15th of Apr., the 6 th case of pml - after 31 months - is listed in the Ty-update.
Again, ex-USA, and I bet , again a case in Germany..
Next week I shall clarify this.
If this is the case - then we would have 4 pml cases out of 6 being from Germany.
People, that is no coincidence, like they want to make us believe.

The federal committee has issued a drug policy with reference to Ty, in mid Oct 2008.

http://www.g-ba.de/downloads/39-261-...zumab_BAnz.pdf

Last edited by Chemar; 04-20-2009 at 06:53 PM. Reason: copyright
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Old 04-19-2009, 09:26 AM #6
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Default Other reasons why this latest case is probably from Germany

The patient had been on Tysabri for 31 months (almost 3 years). Tysabri was not approved in the EU until Jul 2006. Most countries in the EU except Germany and the UK have long reimbursement application processes (6 months or longer). The UK has local reimbursement application processes. Therefore it is highly likely this latest case in the 4th PML case from a German patient.

As a US Tysabri patient, this sure makes me feel more confident that the TOUCH program is providing an extra measure of safety.
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Old 04-20-2009, 07:06 PM #7
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Sorry for the long post - thought some may appreciate the update on PML #5 patient from her husband who should be sainted as he's just gone through this PML experience, setting up/preparing for her rehabilitation, dealing with uncovered medical expenses, and he's worried about making sure other MS patients on Tysabri receive proper preventative measures. My important takeaway is that she had new symptoms which she wrote off as MS. TYsabri patients need to be cognizant of new sypmtoms and suspect PML first until confirmed as just new MS symptoms.

Quote:
Originally Posted by komokazi View Post
Update from German blog of the husband of the Feb 10 PML case


Pit:, 02:30 ..am, (( for newbies: Pit`s wife is one of the pml cases - Feb 09 - ))

"Hello all,
Since the 15th of Apr., the 6 th case of pml - after 31 months - is listed in the Ty-update.
Again, ex-USA, and I bet , again a case in Germany..
Next week I shall clarify this.
If this is the case - then we would have 4 pml cases out of 6 being from Germany.
People, that is no coincidence, like they want to make us believe.

The federal committee has issued a drug policy with reference to Ty, in mid Oct 2008.

http://www.g-ba.de/downloads/39-261-...zumab_BAnz.pdf
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Old 04-20-2009, 10:06 PM #8
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Quote:
Originally Posted by Supra_kid View Post
o and polar, i am calling you right after school on monday to hear all about it! i hope it goes well! love you!
Infusion #1 done and history, no problems, no need for Benedryl or Epinephrine, drove home in nasty Twin Cities road construction traffic, stopped at Lil' Oscars for dinner on the way home..Everything went great (yay!)..Love you, too, SK!
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Old 04-21-2009, 05:39 PM #9
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Yeaaaaaaa, Polar, Congrats...I hope this is your magic bullet..
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Old 04-21-2009, 10:13 PM #10
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Thanks, Sal..I'm keeping a positive attitude. It went so well yesterday, I'm hoping it keeps on going that well..Felt fine today, didn't poop out till later in the afternoon..That's pretty good for me. I don't know if it's just the high from finally getting this done, or if it's the Ty, but I'll take it anyway!
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