I’ve been on Entyvio since August 8. I did my normal loading doses, then the first regular infusion at 8 weeks. They bumped the next one to 6 weeks when I wasn’t improving, and then to 4 weeks. My symptoms have worsened a little over time. At times I think I’m seeing gradual improvement but I’m still having bleeding, tenesmus, cramping, urgency, etc. Some days are better than others.
Since my second to last infusion, I’m seeing more diarrhea, which is not a normal symptom for me (I normally have constipation), which has been MUCH worse since my last infusion on Tuesday. I’m only going 2-3 times per day but with crazy urgency at times. The diarrhea seems to be worsening with the more frequent infusions.
I’m requesting a calprotectin level and c-diff test, but what do you all think? Assuming it’s not c-diff, is it time to throw in the towel on Entyvio? I’m sad and frustrated that I’ve gone through so many drugs and my disease doesn’t seem to respond to any of them (even prednisone) except for a short 3 month remission on Remicade (which stopped working).
As for diet, I’ve eliminated dairy, coffee (sadly), alcohol. I’m trying gluten free again right now. I don’t eat a ton of fiber. Probiotics make things MUCH worse. I have not tried cutting out sugar but could try that next :/ although I don’t want to.
Is it time to ask for Xeljanz? Should I give up on Entyvio? What would you do?
*edit: my signature was out of date - we stopped tacrolimus in the fall.
F, 41. Diagnosed Feb. 2017 - left-sided UC.
Failed mesalamines (intolerant) and Remicade (partial response)
Short remission fall/winter 2017
Flaring since Feb 2018
Currently on tacrolimus supps 1x daily, waiting to start Entyvio.
Zoloft; mostly dairy free, avoiding carrageenan like the plague ;)
Post Edited (Fletch10) : 1/20/2019 9:39:14 AM (GMT-7)