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Tysabri Check In, Support and Information Part Three

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Old 04-21-2011, 02:12 PM #1
Grammie 2 3 Grammie 2 3 is offline
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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
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Old 04-21-2011, 02:36 PM #2
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Do they consider previous use of short-term SoluMedrol to be immunosuppressive?

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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
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Old 04-21-2011, 04:42 PM #3
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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
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Old 04-22-2011, 01:05 PM #4
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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
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Old 04-22-2011, 11:03 PM #5
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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!
.
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