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-   -   Tysabri Information and Check In part 2 (https://www.neurotalk.org/multiple-sclerosis/84538-tysabri-information-check-2-a.html)

ewizabeth 04-17-2009 01:01 AM

Tysabri Information and Check In part 2
 
Part two, resume your conversation. :)

Riverwild 04-17-2009 08:06 AM

:I-Agree::Thanx::highfive::Bow:

Wheeeee!:yahoo:

We've come a LONG way! :grouphug:

Onwards and Upwards!

:rocket::BeamUp::Boy(angel-flying)::Girl(angel-flying):

Riverwild 04-18-2009 07:26 AM

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.

Supra_kid 04-18-2009 09:52 PM

o and polar, i am calling you right after school on monday to hear all about it! i hope it goes well! love you! :hug:

komokazi 04-19-2009 07:38 AM

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

komokazi 04-19-2009 09:26 AM

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.

komokazi 04-20-2009 07:06 PM

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 (Post 498200)
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


PolarExpress 04-20-2009 10:06 PM

Quote:

Originally Posted by Supra_kid (Post 498119)
o and polar, i am calling you right after school on monday to hear all about it! i hope it goes well! love you! :hug:

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!:hug:

SallyC 04-21-2009 05:39 PM

Yeaaaaaaa, Polar, Congrats...I hope this is your magic bullet..:hug:

PolarExpress 04-21-2009 10:13 PM

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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