advertisement
Reply
 
Thread Tools Display Modes
Old 04-09-2011, 05:02 PM #111
Grammie 2 3 Grammie 2 3 is offline
Member
 
Join Date: Aug 2007
Location: Colorado
Posts: 374
15 yr Member
Grammie 2 3 Grammie 2 3 is offline
Member
 
Join Date: Aug 2007
Location: Colorado
Posts: 374
15 yr Member
Default New Information on Ty Label re pml

Sorry I didn't pay closer attention to give you the site I actually thought info would've already been posted here.
Between 25-36 infusions odds are 1.5/1000
Between 37-48 infusions odds are .9/1000
risk is greater if you had been on an immunosuppressant
Grammie 2 3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Natalie8 (04-10-2011), Riverwild (04-10-2011), SallyC (04-10-2011), shayna (04-11-2011)

advertisement
Old 04-10-2011, 09:19 AM #112
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

Thanks Linda! I hadn't had a chance to post this info yet, I've been doing 12 hour shifts and trying to fix my stupid laptop...

Biogen and Elan were approved for a label change for Tysabri.

"The included data shows the risk of getting the infection is 0.3 patients per 1,000 when using the drug for less than two years. That rate rises when using the drug for two to three years, to 1.5 cases, but notably drops to 0.9 cases for the period of three to four years. The data is current as of January and Biogen said the label will be updated as needed."

http://online.wsj.com/article/BT-CO-...07-712561.html

The article linked to also addresses the test for antibodies and the plan to add it to the label.
__________________
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Tysabri withdrawn from market 02/28/05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   Reply With QuoteReply With Quote
"Thanks for this!" says:
Grammie 2 3 (04-10-2011), Natalie8 (04-10-2011), SallyC (04-10-2011), shayna (04-11-2011)
Old 04-18-2011, 07:38 AM #113
Victor H Victor H is offline
Senior Member
 
Join Date: Jan 2008
Posts: 1,090
15 yr Member
Victor H Victor H is offline
Senior Member
 
Join Date: Jan 2008
Posts: 1,090
15 yr Member
Default

FYI - http://www.bloomberg.com/news/2011-0...ease-risk.html

I hope this report helps clarify more about Tysabri impacts.

-Vic
Victor H is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Grammie 2 3 (04-23-2011), Natalie8 (04-18-2011), Riverwild (04-22-2011), SallyC (04-18-2011)
Old 04-21-2011, 02:12 PM #114
Grammie 2 3 Grammie 2 3 is offline
Member
 
Join Date: Aug 2007
Location: Colorado
Posts: 374
15 yr Member
Grammie 2 3 Grammie 2 3 is offline
Member
 
Join Date: Aug 2007
Location: Colorado
Posts: 374
15 yr Member
Default AAN conference

The AAN - American Academy of Neurology - had their 2011 conference on Tysabri. It states that if you have 3 risk factors, which are being on Ty longer than 2 years, taken an immunosuppressant before Ty and being jc virus positive your odds of pml are 1/100.

I have 2 of those and would like to know what those odds are.

I hate that the med I love has a risk factor that worries me
Linda
Grammie 2 3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Natalie8 (04-25-2011), Riverwild (04-22-2011), shayna (04-28-2011)
Old 04-21-2011, 02:36 PM #115
roadaction13 roadaction13 is offline
Junior Member
 
Join Date: Dec 2010
Posts: 22
10 yr Member
roadaction13 roadaction13 is offline
Junior Member
 
Join Date: Dec 2010
Posts: 22
10 yr Member
Default

Do they consider previous use of short-term SoluMedrol to be immunosuppressive?

Quote:
Originally Posted by Grammie 2 3 View Post
The AAN - American Academy of Neurology - had their 2011 conference on Tysabri. It states that if you have 3 risk factors, which are being on Ty longer than 2 years, taken an immunosuppressant before Ty and being jc virus positive your odds of pml are 1/100.

I have 2 of those and would like to know what those odds are.

I hate that the med I love has a risk factor that worries me
Linda
roadaction13 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Grammie 2 3 (04-22-2011), Natalie8 (04-25-2011), Riverwild (04-22-2011), shayna (04-28-2011)
Old 04-21-2011, 04:42 PM #116
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

Quote:
Originally Posted by roadaction13 View Post
Do they consider previous use of short-term SoluMedrol to be immunosuppressive?

"In addition, patients treated with an immunosuppressant (IS) prior to receiving TYSABRI have an increased risk of PML;
IS use includes agents such as mitoxantrone, azathioprine, methotrexate, cyclophosphamide, mycophenolate and
cladribine, rituximab, and chemotherapy (not otherwise specified)."

Short term SoluMedrol not listed as IS
komokazi is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Grammie 2 3 (04-22-2011), Natalie8 (04-25-2011), Riverwild (04-22-2011), shayna (04-28-2011)
Old 04-22-2011, 01:05 PM #117
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

Just found out today that I am JC Virus antibody positive. Like Grammie, I've been on Tysabri for over two years (4 years, 3 months). Guess I'll have to think about it and confer with my Neuro on the options.

Chris
komokazi is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Grammie 2 3 (04-22-2011), Natalie8 (04-25-2011), Riverwild (04-22-2011), shayna (04-28-2011)
Old 04-22-2011, 11:03 PM #118
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

I had # 51 yesterday. No problems, no concerns, usual infusion day.
Next month will be 4 years for me.
__________________
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   Reply With QuoteReply With Quote
"Thanks for this!" says:
DizzyLizzy (04-24-2011), Grammie 2 3 (04-23-2011), Natalie8 (04-25-2011), SallyC (04-23-2011), shayna (04-28-2011)
Old 04-23-2011, 01:10 PM #119
Grammie 2 3 Grammie 2 3 is offline
Member
 
Join Date: Aug 2007
Location: Colorado
Posts: 374
15 yr Member
Grammie 2 3 Grammie 2 3 is offline
Member
 
Join Date: Aug 2007
Location: Colorado
Posts: 374
15 yr Member
Default

Quote:
Originally Posted by Victor H View Post
FYI - http://www.bloomberg.com/news/2011-0...ease-risk.html

I hope this report helps clarify more about Tysabri impacts.

-Vic
Hey Vic, just read this-took me awhile
How are you and your DW ? Hope well and doing well !!!
On another site I am lindaincolorado
Linda
Grammie 2 3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DizzyLizzy (04-24-2011), Natalie8 (04-25-2011), Riverwild (04-24-2011), shayna (04-28-2011)
Old 04-25-2011, 11:35 AM #120
Natalie8's Avatar
Natalie8 Natalie8 is offline
Member
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Natalie8 Natalie8 is offline
Member
Natalie8's Avatar
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Default



My doctor just called and I am negative for the JC virus antibody! Yeah!!!!! I get to stay on Tysabri!

Thank god and what a relief because I was not looking forward to trying Gilenya.
__________________
On Tysabri and love it.
.
Natalie8 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DizzyLizzy (05-02-2011), Grammie 2 3 (04-25-2011), Riverwild (04-25-2011), shayna (04-28-2011)
Reply


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 and Check In part 2 ewizabeth Multiple Sclerosis 745 01-11-2011 09:17 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
Looking to Share Information & Support catluvr123 New Member Introductions 11 05-07-2008 08:45 AM


All times are GMT -5. The time now is 03:05 AM.

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.