Tacrolimus/Prograf for Crohn's

Hello -- I started tacrolimus 13 months ago. Humira and remicade failed to help my fistula, so doctors put me on tacrolimus / and then added 6 mp after 2 months on tacrolimus. I didn't really see any GI effects from the tacrolimus - no nausea or other problems. Ihad to have weekly blood tests then monthly blood tests at first. My insurance would not pay for them, so now I seldom have them since I'm about flat broke and simply can't afford them (the Prometheus lab actually was rather nice about it, but my insurance BC BS of SC was brutal about denying the necessary tests).

I worry about taking it, after reading the possible long term side effects of it, and actually stopped taking (took a 1 month medication holiday) after 10 months on it. Big mistake -- I got worse fast. I saw slight improvements after 4 months, and I thought YIPPEE, but then I have not improved, but I've stayed steady and holding there. I thought the tacrolimus / 6 mp weren't doing much, so stopped, but as I said, when I stopped taking it, I got way worse within 6 weeks. So I'm back on. Good luck with it. It is definitely doing some good for me, just not as fast as I'd like.
NDBC