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Crohns & MS
New Member


Date Joined Apr 2009
Total Posts : 15
   Posted 4/30/2009 12:43 PM (GMT -6)   
Anyone taking Tysabri?  I am currently on Avonex and doing well with my MS but since I have Crohn's and they can't get that under control my doctors talk about Tysabri all the time.
 
 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 4/30/2009 9:51 PM (GMT -6)   
We have a couple of members on tysabri.  Lynn/sweetlydia is on it and she loves it!  She has been rock solid since she started it.  Be patient.  She posts once or twice a week. 

Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


tommy one tooth
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/13/2009 11:16 AM (GMT -6)   
I have done some research on tysabri. I am not sure if I want to go on it. There has only been a two year study with it. Every place I read about it, it sounds like an infomercial. Besides, the risks of a possible brain infection or death doesn't make me want to run right out and try it.

Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 7/13/2009 12:10 PM (GMT -6)   
I am on it and doing well, I've had about 4 infusions and I seem to really be doing better. Good luck on whatever you chose.
-Tertle(Andy)


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 7/15/2009 5:49 PM (GMT -6)   
Hey There Chrons,
I have been on Tysabri since March of 08. It is a huge decision that needs to be made by you and you alone, its your body. Every drug has side effects. For me, i was constantly sick. On Rebif for 14 months with a flair every 3-4 months and never any relief. New lesions, etc. It was a huge scary decision. I am a mother of a 12 yr old and could never do anything or go anywhere b/c i just couldnt. I was being pulled 2 ways in my mind. One, was it selfish to put myself at risk by taking this drug because who would take care of her if something happened. Or, two, was it selfish not to give it a try for a chance at feeling better and being able to possibly do more with and for her. I was back and forth for several months until finally i couldnt stand it anymore and decided to give it a try. I am so glad i did. I am so much more active and have been stable since i started. As soon as i stopped rebif, i felt so much better. All my aches and pains went away that i thought were from my ms, but actually were from the rebif. You know, i try not to think about PML. It is a huge risk, but like i said before, read other labels. I know they don't have the BIG BLACK BOX WARNING, but some of their side effects are scary too. I dont know, i think its worth the risk for me personally. Also, with you having chrons and ms, you can get a two-fer. Should you have any questions, feel free. Oh and also it will sure beat the needles every week, believe me. I hated doing that so much (mine was 3 x's wk). Now i go once a month and i'm done. Just a few thoughts.
Lynn

Hahaha- didn't realize this post was so old-blah blah blah- maybe it will help someone out there.
Dx MS December, 2006
Started Tysabri March, 2008
Zanaflex as needed
Cymbalta

Post Edited (Sweetlydia66) : 7/15/2009 5:53:02 PM (GMT-6)


Jin_Rou
Regular Member


Date Joined Aug 2009
Total Posts : 24
   Posted 8/27/2009 10:11 PM (GMT -6)   
I also have Crohns and MS at the same time. So far LDN does not seem to be working for me. I might give it more of a chance, but I worry about whether taking two completely different drugs for MS and Crohns together in combinations that have never been studied might actually be a bigger risk than just taking Tysabri....I am not sure.

WildRose
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/9/2009 8:01 AM (GMT -6)   
Hi all--
I am writing with an eye on my sister, who was diagnosed with MS about 7 years ago. Her recent MRI portends trouble ahead, so I am doing some research.

It is my understanding that PML is linked to the JC virus--which they can test for. If you test negative for exposure to JC, then wouldn't PML be out of the question???

She is spooked about new meds. Is this the med that's supposed to be so good at reducing the appearance of new plaques? Ann, Susan's sis
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