New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Jin_Rou
Regular Member


Date Joined Aug 2009
Total Posts : 24
   Posted 8/26/2009 6:50 PM (GMT -7)   
Anyone ever use Tysabri for Crohns? I have Crohns and MS.....currently trying LDN first because its safer, but would like to know what I am in for if I decide to go with the stronger more dangerous medication.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/26/2009 7:13 PM (GMT -7)   
Hi there and welcome. There are a handful of use who have/are using Tysabri for Crohn's. I was on it for 6 months but discontinued because the benefit was so little that it nowhere near made the risk worthwhile.

The others on here seem to have had great luck with Tysabri. I'd imaging that they'll check in sooner or later and reply to your post.
--female dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09


Jin_Rou
Regular Member


Date Joined Aug 2009
Total Posts : 24
   Posted 8/26/2009 8:07 PM (GMT -7)   
I have limited options. I would not take Tysabri for just Crohns, but I also have MS, so I either need to take 2 different drugs or just Tysabri.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/26/2009 8:13 PM (GMT -7)   
check out the medications thread in my sig.

Welcome!
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Jin_Rou
Regular Member


Date Joined Aug 2009
Total Posts : 24
   Posted 8/26/2009 9:04 PM (GMT -7)   
I unfortunately cannot use any TNF inhibitors because they will worsen MS.

I also cannot use any immune suppressants because once you take an immune suppressant you will not be eligible to start therapy with Tysabri.

So what does that leave me with that I can take with interferons?

GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 8/26/2009 9:38 PM (GMT -7)   
You might look into ustekinumab. It's not one of the typical anti-TNFa biologics, rather it targets "adhesion" and interleukens 17/23 if I recall. It's in trials.

Dave123
Regular Member


Date Joined Feb 2005
Total Posts : 223
   Posted 8/27/2009 6:18 AM (GMT -7)   
I took Tysabri when it was still in trials years ago. Best drug I've ever taken for Crohn's. And I've taken them all. I was only on it for a few months but I never felt better. The trial ended when someone died from PML and I haven't taken it since. I'm a bit scared of the risks but would consider it again if I go into major flare.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 8/27/2009 6:57 AM (GMT -7)   
Nick, you should be able to start an immune suppressant and give it a shot. If it doesn't work you can stop the immune suppressant and try the Tysabri.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Jin_Rou
Regular Member


Date Joined Aug 2009
Total Posts : 24
   Posted 8/27/2009 3:25 PM (GMT -7)   
The rumor I have been hearing is that if I take an immune suppressant then I will be disqualified for Tysabri. I guess people who have previously been on immune suppressants, even after discontinuing their use, are considered high risk for PML and other complications. So if I decide to take the immune suppressant I might not be able to take Tysabri. That is what I have been hearing anyway.

Everything is more complicated when you have two auto-immune conditions which respond to different treatments.


The only drugs I can take for Crohns would be local anti-inflammatory drugs that are neither TNFIs nor immune suppressants, unless I am sure I dont want to go on Tysabri.

Post Edited (Nick_Jinn) : 8/27/2009 4:39:55 PM (GMT-6)


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 8/27/2009 7:00 PM (GMT -7)   
Nick_Jinn said...
The rumor I have been hearing is that if I take an immune suppressant then I will be disqualified for Tysabri. I guess people who have previously been on immune suppressants, even after discontinuing their use, are considered high risk for PML and other complications. So if I decide to take the immune suppressant I might not be able to take Tysabri. That is what I have been hearing anyway.


I would check with your GI about that. Even prednisone is an immune suppressant (actually a very powerful one), I can't imagine them dq'ing people who've taken prednisone...
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/28/2009 1:39 AM (GMT -7)   
I have looked into tsabri when cimzia was still getting approved and there were no guidelines that said you would be disqualified if you had used an immunosuppressant. I chose cimzia because it was so similar to the remicade and humira that had been somewhat effective for me, but am not considering tsabri. Where did you hear about the disaqualification due to immunosuppressants ? I think that it is just what you said it is, a rumor. Tsabri is mainly used for people with M.S. and nearly everyone I know that has M.S. has been on either methotrexate, mercaptapurine, or immuran. All of these along with the steroids are immunosuppressants. Tsabri is blackbox drug and should be heavily research before considering the move to it, but for many of us it is a last option medication. I know that my insurance would not approve a drug like that if I had not failed all of the other ones first. Just like when I went to cimzia, I had to have used and fail remicade and humira previously.

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 9/8/2009 11:05 AM (GMT -7)   
A little late but maybe I can still shed some light from my experience. I've been on tysabri for 1 1/2 years for crohns. It has helped me out greatly. One of the big things about being on tyabri was that I could not be on any immunosuppressants while being on tysabri. Every person is different but tysabi has been the drug that has been life changing for me.
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 3:27 AM (GMT -7)
There are a total of 2,732,437 posts in 301,021 threads.
View Active Threads


Who's Online
This forum has 151185 registered members. Please welcome our newest member, monjurmuradd.
169 Guest(s), 0 Registered Member(s) are currently online.  Details



Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer