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Tysabri working... but getting cold feet....

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Crohn's Disease
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Posted 9/10/2013 4:27 PM (GMT 0)
I have had Crohn's disease since 1998. I have tried numerous medicines, including all the biologics (Remicade worked for me for about 5 years, then stopped). I was one of the first children to have remicade when it came out. I have even been on a couple studies and failed them...

I am currently on Tysabri. Been on it since about March. The first infusions didn't seem to help too much, but it seems that it has been working as my inflammation markers have been great, my vitamin levels are getting normal, and my weight is up to normal, the first time that happened in years. Though I haven't had a formed stool... could be due to them taking out my ileum.

Anyway, I am getting scared being on it moving forward. I have been seeing people who are on it long term getting PML... and as months go by... I really don't want that to happen to me. I had one test for the JC Virus that came back negative... and am going to get another this weekend.

I am not sure if there is something that may work well to keep me well now that Tysabri has helped get me calmed down. I know my doctor said after 6 months, maybe revisiting what I am on... and am really thinking that may be wise....

Any thoughts would be greatly appreciated...

Posted 9/10/2013 5:45 PM (GMT 0)
I was on tysabri for 3 years when it was pulled by the FDA. I believe most of the people who had PML were MS people who were also taking beta- interferon. I do remember 1 CD (maybe?) Then started remicade for 3 years, built up anti-bodies. Started on cimzia, did not work. I stared back on tysabri for another 3 years until 11/12. It was sponsored by a program at VCU Medical center. I was for the longest time their only patient receiving it. It worked very well for me. One infusion every 4 weeks. I had no side effects, felt better. It also stopped working after 3 years. I think I have a 3 year threshold for how long biological meds work for me. That was my experience with tysabri.
Posted 9/11/2013 2:55 PM (GMT 0)
Hi JakeB,

I have been on Tysabri since February and it has turned my life around. I was having a tough time after Remicade stopped working after 6 years. I tested positive to JC Virus but decided to go ahead anyway. I have become more active and my days of running to the bathroom have significantly decreased. I have had Crohn's since 1984 and have lived in England, Canada and now here in the States and I have been looked after like a VIP by my GI Dr. I trust him although i still have doubts and worries about taking the meds its always at the back of my mind.
I wait in anticipation for the next new med that will be FDA approved without the worry of brain disease.
Posted 9/16/2013 6:58 PM (GMT 0)
I have restarted Tysabri infusions after being treated in a two year trial that ended six years ago. I have both MS and Crohn's and am using Tysabri for MS primarily but I am starting back on Tysabri because of the numerous and significant benefits and results it has given me. In short, I was disabled and am walking since Tysabri and the recurrence of a few other less catastrophic symptoms prompted me to elect treatment again before the more life altering symptoms reappeared.

Particularly if you're JC Negative then I would personally have no hesitation in recommending Tysabri. The vigilance that the medical community advise regarding the appearance of new neurological events is really the main thing to be mindful of given that the majority of people who have developed pml recovered from it after diagnosis and management through treatment.
Posted 9/26/2013 5:09 PM (GMT 0)
My gastro has informed me that there is another version of this med coming out next year that does not penetrate the blood/brain barrier
Posted 10/15/2013 5:15 PM (GMT 0)
CCBoys.... I actually was on the study for that medicine at one time.... ended up n the hospital as I had partial blockage in my intestines due to strictures, and was tossed out due to that. There was talk that the medicine may have caused scarring and it to close due to that... but I believe I may have been on the placebo.

So far on Tysabri, it has been working pretty well. My JC Virus test came back negative once again (after 6/7 months on Tysabri), so it has helped me relax a bit more. Hopefully by spring/summer next year, the medicine I was on in trial will be approved and I can transfer to that. I think that was ultimately my GI's idea....

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