advertisement
Closed Thread
 
Thread Tools Display Modes
Old 04-17-2009, 01:01 AM #1
ewizabeth's Avatar
ewizabeth ewizabeth is offline
Elder
 
Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
ewizabeth ewizabeth is offline
Elder
ewizabeth's Avatar
 
Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
Arrow Tysabri Information and Check In part 2

Part two, resume your conversation.
__________________
Wiz

Turn Left at the next election.
.


RRMS DX 01/28/03 Started Copaxone again on 12/09/09
ewizabeth is offline  
"Thanks for this!" says:
Curious (04-17-2009), Natalie8 (04-17-2009), Riverwild (04-17-2009)

advertisement
Old 04-17-2009, 08:06 AM #2
Riverwild's Avatar
Riverwild Riverwild is offline
Magnate
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Default



Wheeeee!

We've come a LONG way!

Onwards and Upwards!

__________________
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Tysabri withdrawn from market 02/28/05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!
.
Riverwild is offline  
"Thanks for this!" says:
Curious (04-17-2009), ewizabeth (04-17-2009), Natalie8 (04-17-2009)
Old 04-18-2009, 07:26 AM #3
Riverwild's Avatar
Riverwild Riverwild is offline
Magnate
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Default

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.
__________________
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!
.
Riverwild is offline  
"Thanks for this!" says:
ewizabeth (04-19-2009), Natalie8 (04-20-2009)
Old 04-18-2009, 09:52 PM #4
Supra_kid's Avatar
Supra_kid Supra_kid is offline
Junior Member
 
Join Date: Mar 2009
Location: Blair, Nebraska
Posts: 32
15 yr Member
Supra_kid Supra_kid is offline
Junior Member
Supra_kid's Avatar
 
Join Date: Mar 2009
Location: Blair, Nebraska
Posts: 32
15 yr Member
Heart

o and polar, i am calling you right after school on monday to hear all about it! i hope it goes well! love you!
__________________
Hi Mom!
.
(PolarExpress)

(sold
.
) 1986 Toyota Celica-supra: 6m hybrid swap, Stage2 clutch, bored TB.
next victim: BMW E21, w/RB25DET swap.
.
Supra_kid is offline  
"Thanks for this!" says:
Riverwild (04-20-2009)
Old 04-19-2009, 07:38 AM #5
komokazi komokazi is offline
Member
 
Join Date: Dec 2008
Posts: 192
15 yr Member
komokazi komokazi is offline
Member
 
Join Date: Dec 2008
Posts: 192
15 yr Member
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
komokazi is offline  
"Thanks for this!" says:
ewizabeth (04-19-2009), Grammie 2 3 (04-20-2009), Natalie8 (04-20-2009), Riverwild (04-20-2009)
Old 04-19-2009, 09:26 AM #6
komokazi komokazi is offline
Member
 
Join Date: Dec 2008
Posts: 192
15 yr Member
komokazi komokazi is offline
Member
 
Join Date: Dec 2008
Posts: 192
15 yr Member
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.
komokazi is offline  
"Thanks for this!" says:
ewizabeth (04-19-2009), Grammie 2 3 (04-20-2009), Natalie8 (04-20-2009), Riverwild (04-20-2009)
Old 04-20-2009, 07:06 PM #7
komokazi komokazi is offline
Member
 
Join Date: Dec 2008
Posts: 192
15 yr Member
komokazi komokazi is offline
Member
 
Join Date: Dec 2008
Posts: 192
15 yr Member
Default

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
komokazi is offline  
"Thanks for this!" says:
ewizabeth (04-20-2009), Natalie8 (04-20-2009), Riverwild (04-20-2009)
Old 04-20-2009, 10:06 PM #8
PolarExpress's Avatar
PolarExpress PolarExpress is offline
Grand Magnate
 
Join Date: Jan 2008
Location: Red Wing, MN
Posts: 3,166
15 yr Member
PolarExpress PolarExpress is offline
Grand Magnate
PolarExpress's Avatar
 
Join Date: Jan 2008
Location: Red Wing, MN
Posts: 3,166
15 yr Member
Default

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!
__________________

.
PolarExpress is offline  
"Thanks for this!" says:
barb02 (04-21-2009), ewizabeth (04-20-2009), komokazi (04-21-2009), Natalie8 (04-20-2009), Riverwild (04-22-2009), SallyC (04-21-2009)
Old 04-21-2009, 05:39 PM #9
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

Yeaaaaaaa, Polar, Congrats...I hope this is your magic bullet..
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline  
"Thanks for this!" says:
ewizabeth (04-21-2009), Natalie8 (04-22-2009), Riverwild (04-22-2009)
Old 04-21-2009, 10:13 PM #10
PolarExpress's Avatar
PolarExpress PolarExpress is offline
Grand Magnate
 
Join Date: Jan 2008
Location: Red Wing, MN
Posts: 3,166
15 yr Member
PolarExpress PolarExpress is offline
Grand Magnate
PolarExpress's Avatar
 
Join Date: Jan 2008
Location: Red Wing, MN
Posts: 3,166
15 yr Member
Default

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!
__________________

.
PolarExpress is offline  
"Thanks for this!" says:
ewizabeth (04-21-2009), Riverwild (04-22-2009), SallyC (04-22-2009)
Closed Thread

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
LDN Information & Check-in 2 SallyC Multiple Sclerosis 827 07-07-2017 09:46 PM
Tysabri Information & Check In Curious Multiple Sclerosis 988 04-16-2009 05:09 PM
LDN Information & Check In SallyC Multiple Sclerosis 844 01-15-2009 11:40 AM
Part 2...Medicare Part D/Prescription Coverage Stitcher Parkinson's Disease 1 12-17-2006 12:50 AM


All times are GMT -5. The time now is 10:46 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is 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.