Hspencer - Tysabri

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JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 9/29/2007 7:11 AM (GMT -7)   
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. 
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/29/2007 9:36 AM (GMT -7)   
Judy what are the initial problems? I missed this survey, must have been asleep or something!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 9/29/2007 10:22 AM (GMT -7)   
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.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 9/29/2007 2:46 PM (GMT -7)   
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.
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
currently on Low Dose Netroxene (started Jan. 19, 2007)...against Dr's wishes, he was pushing for Remicade.  Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
51 yrs old

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