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Old 09-22-2009, 08:50 PM
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Riverwild Riverwild is offline
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Join Date: May 2007
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Quote:
Originally Posted by Natalie8 View Post
I wonder why no one being treated for Crohns disease has gotten PML. Maybe the numbers are just lower in terms of total taking drug? I see my neurologist tomorrow. I have plenty of questions to ask about Ty and PML. I'll let you know what I find out. I'm curious to know what she thinks of the CCSVI theory. Enjoy the day!

RW: Thanks for the extremely useful information. I guess the aren't willing to or can't speculate on the risk above 24 months? What do you think?
Sorry so late to answer this! I've been working...

I think that I heard that Elan dismissed their Crohn's sales team. I do know that a lot of the gastro docs/rheumatologists are as conservative as a lot of neuros are.

In addition, many docs move to stronger drugs and a lot of those drugs may be contraindicated before Tysabri. They may feel the risk is not worth it when it comes to prescribing Tysabri. We may see more Tysabri use sooner (before stronger drugs used for Crohn's are used) as younger docs come up through the ranks.

I also think that as with any new drug, a lot of docs wait to see what happens with others using the new drugs before they prescribe.

I don't hear much news on Crohns disease and use of Tysabri, but I am not usually looking for it either. I am sure that it's out there, maybe they aren't as vocal as we are?

As far as the speculation on the risk above 24 months use, I believe they use data from studies being conducted on people who are enrolled in the STRATA and the TYGRIS trials, which follows people on Tysabri for MS. I didn't join the STRATA or TYGRIS trials because it wasn't offered to me, I think it had to do with where you go for treatment and I am in a very rural area without the researchers available, and there were certain requirements that had to be met to be in the trials.

Hope everyone is doing well!
I am as usual-working too much and trying to get ready for winter before it gets here to Maine!
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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?


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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
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Negative for JC virus antibodies!
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I'm doing alright and making good grades,
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"Thanks for this!" says:
azoyizes (09-26-2009), ewizabeth (09-22-2009), Natalie8 (09-23-2009)