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-   -   Tysabri Check In, Support and Information Part Three (https://www.neurotalk.org/multiple-sclerosis/142931-tysabri-check-support-information.html)

Grammie 2 3 04-09-2011 05:02 PM

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

Riverwild 04-10-2011 09:19 AM

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...:mad:

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.

Victor H 04-18-2011 07:38 AM

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

I hope this report helps clarify more about Tysabri impacts.

-Vic

Grammie 2 3 04-21-2011 02:12 PM

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

roadaction13 04-21-2011 02:36 PM

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

Quote:

Originally Posted by Grammie 2 3 (Post 764226)
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


komokazi 04-21-2011 04:42 PM

Quote:

Originally Posted by roadaction13 (Post 764231)
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 04-22-2011 01:05 PM

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

Riverwild 04-22-2011 11:03 PM

I had # 51 yesterday. No problems, no concerns, usual infusion day.
Next month will be 4 years for me.

Grammie 2 3 04-23-2011 01:10 PM

Quote:

Originally Posted by Victor H (Post 763225)
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

Natalie8 04-25-2011 11:35 AM

:trampoline: :trampoline: :trampoline:

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

Thank god and what a relief because I was not looking forward to trying Gilenya.


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