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dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 5/10/2012 10:52 AM (GMT -6)   
Hi everyone:
I usually post in the Crohn's group, but thought I would post in the MS group. I have severe Crohn's Colitis. Long story short, I have exhausted all meds and I am scheduled for my first Tysabri infusion on Tuesday. I did take the PML blood test and it came back negative. I am still terrified to try this drug due to the PML. Does anyone in this group use it for MS? Nobody in the Crohn's or Ulcerative Colitis groups seem to use it ... too scared. Or at least it is never mentioned there. I just wanted to get your perspective on Tysabri because I know it is heavily used for MS.
Thanks for your input and good luck to everyone! Thanks, Debbie
41 years old female
Salmonella - 1996
Crohn's Colitis in entire colon - Diagnosed in 2000
Hypersensitive/Allergic to Asacol/Pentasa/Budonside/6MP/Humira/Remicade/Cycloporine, foams, and much more
Also tried SCD, didn't work
Past meds that worked: Cipro, Prednisone

Daily: Folic Acid, Vitamin D3, Multi-Vitamin, Prednisone 40mg, homemade yogurt

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3556
   Posted 5/10/2012 8:05 PM (GMT -6)   
Hi Debbie,

I am not on tysabri. I'm sorry I can't help. You might try the website/forum called MS world. There is an entire board for tysabri. They would have lots of info for you. I hope it works for you. I have heard it is quite successful. Best of luck.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 5/10/2012 8:49 PM (GMT -6)   
Thank you Gretchen1. I just checked it out. Very helpful!
41 years old female
Salmonella - 1996
Crohn's Colitis in entire colon - Diagnosed in 2000
Hypersensitive/Allergic to Asacol/Pentasa/Budonside/6MP/Humira/Remicade/Cycloporine, foams, and much more
Also tried SCD, didn't work
Past meds that worked: Cipro, Prednisone

Daily: Folic Acid, Vitamin D3, Multi-Vitamin, Prednisone 40mg, homemade yogurt

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3556
   Posted 5/11/2012 2:09 PM (GMT -6)   
My pleasure. I'm glad it was helpful.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

gimp79
New Member


Date Joined Jul 2011
Total Posts : 16
   Posted 5/13/2012 7:26 AM (GMT -6)   
 i am on tysabri for 2 years now and i have tested positive for the jc virus...after long thought i am going to stay on it until another oral med.is fda approved..the tysabri has helped so much....i have been out of the hospital for 2 years now..the mri's have been very good as well...there is a plan incase pml would strike...but for me going off tysabri the flareups would more than likely have the same results...so as long as they monitor you i think and it is just my opinion everything will be ok..barb

Tranquilrain
Regular Member


Date Joined May 2012
Total Posts : 48
   Posted 5/31/2012 8:35 AM (GMT -6)   
gimp79, how is it going? Are you still on tysabri or did you go to the pill? @dietcoke I had no idea tysabri was used for Chrones, My brother just got DX with Chrones a few months ago. How are you doing now?

gimp79
New Member


Date Joined Jul 2011
Total Posts : 16
   Posted 6/1/2012 8:01 AM (GMT -6)   
the tyasbri has worked well for me...my doc. and i have decided to stay on it until a new pill gets fda approved..of course i cant remember the name of it but like he says it will change many times before it comes out....the risk with tysabri is worth it for me..without it i would be in worse shape so i am ok with the risks..they do extra mri's and keep a watch for any problems..i put off taking it until i had no choice but to go on it and now i wish i had done it sooner...barb

Tranquilrain
Regular Member


Date Joined May 2012
Total Posts : 48
   Posted 6/1/2012 8:11 AM (GMT -6)   
Congratulations! It sounds like it works for you!
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