Posted 4/21/2016 2:29 PM (GMT 0)
It sounds like the Entyvio is not working. My husband had 6 or 7 infusions, including towards the end shortening the time period between the infusions, but it really did not seem to help. You should NOT be having the symptoms you are having. Husband could not get off of prednisone, and he and doc concluded the Entyvio just wasn't working. Only thing that worked consistently was steroids, but that is not a long-term option (already been on them for almost two years straight).
At that point, we started to explore surgery options, just to be smart about it and start getting psychologically prepared.
At the last minute, our insurance approved Xeljanz off-label and we are in the early stages of seeing whether that works.
Clinical trials for UC using Stelara have just started, so that may be something to explore. The problem there is you may end up on a placebo, although my understanding is that will be evident early on if symptoms don't improve and then they will put you on a drug.