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Hspencer - Tysabri

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Crohn's Disease
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JudyK89
Veteran Member
Joined : Dec 2006
Posts : 1986
Posted 9/29/2007 8:11 AM (GMT -6)
Just thought you'd like to know that while I was at the infustion center the other day (my father-in-law is receiving chemo) I talked to one of nurses who said she just finished her training for infusing Tysabri which they will start giving to MS patients. 

That's a good sign isn't it?  Still not sure how I feel about it, since reading about the initial problems they had in the clinical trials, but maybe after we see it being used for a while and find out all the side effects we can all make better decisions about trying it for CD when it becomes available. 

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dunny2
Veteran Member
Joined : Jan 2007
Posts : 3200
Posted 9/29/2007 10:36 AM (GMT -6)
Judy what are the initial problems? I missed this survey, must have been asleep or something!!
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JudyK89
Veteran Member
Joined : Dec 2006
Posts : 1986
Posted 9/29/2007 11:22 AM (GMT -6)
I don't remember what caused them, but there were a few (?) deaths? They know what caused it, and now screen patients, but it was a scary side effect at the time.
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hspenser
Veteran Member
Joined : Dec 2005
Posts : 544
Posted 9/29/2007 3:46 PM (GMT -6)
Thanks for note...

They have been infusing the MS folks for a while now....I think at least a year since it has come back on the market for MS...

I got a call the other week (in late August) from the Dr.'s office that did my first trial,...they called and asked if i would be willing to re-join the trial....I told them I was just about to try Humira.  They felt it would be at least 2 or 3 months before the new protocol is issued.  they said I could say yes now, but withdraw if the Humira worked ....if the Humira doesn't work then I stop taking it for 8 weeks and go back to the Tysabri when and if possible.

As for the prior issues...the best thing is to do a quick google or go to the Biogen website...the Elan website is just as good of a source for information as well.

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