Posted 3/2/2022 5:27 PM (GMT 0)
What's up guys?
Some of you know my situation, but here's a recap:
Diagnosed 10 years ago with UC. Started out with the mesalamines and over a short time failed all of them. Moved to the 6mp's and mercaptopurine and also became ineffective recently quickly. Moved to biologics and failed humira, simponi and entyvio. (Was in remission with entyvio for about a year and a half.)
Brings me to present day where I've been in a flare for about a year and a half. (Since entyvio stopped working.) Started remicade about a year ago. I've seen some improvement over the last year but still flaring. (From full pancolitis, to 25cm of severe inflammation from the rectum up.) I've seen numerous GI's, the latest being a specialist out of the University of Miami, and its been suggested that I get the j-pouch surgery done. In the meantime I've been fighting with my insurance company to get 10mg/kg approved of remicade because the remicade seems to have some effect, but at 5mg/kg (every 4 weeks) , not enough to achieve full remission. Well I finally got the 10mg/kg approved, so tomorrow is my first infusion at the higher dose.
I still haven't tried stelara or xeljanz yet. From what my insurance says, I would have to go stelara first and then xeljanz if stelara doesn't work.
I don't know guys, I'm just feeling a little defeated. I know its a positive to have gotten the higher dose of remicade approved, but today, I'm just tired of all of this. Its been my track record that the medicines just stop working for me. I don't want to get my hopes up with the remicade, only to be let down again. Right when I think things are turning around, the bottom falls out again..
Still undecided if the higher dose of remi doesn't work, if I shouldn't just opt for the surgery... Kind of just venting, and I guess seeking your opinion's. Thanks