Posted 8/22/2016 4:31 PM (GMT 0)
Yes, there can often be a disconnect between symptoms and what's seen in a scope, and that disconnect can swing either way. I also have proctosigmoiditis, as you do. I had 3-4 bms a day, was feeling okay with some urgency but I'd classify my own inflammation as mild. My flex-sigmoidoscopy came back as severe inflammation and my gastroenterologist recommended remicade. That was 3 years ago. I had 2 year remission with 1 bm a day.
Today, i'm currently going through a minor flare (scope classified as mild this time). Again it was 3-4 bms a day, but with minor urgency. Prior to this flare, I was only on Remicade. We've decreased my Remicade frequency from every 8 weeks to every 6. We've added Rowasa and prednisone to Remicade and are going to taper pred and see if it's enough. If not, then add 6mp + Rowasa to remicade and then taper prednisone.
It makes sense that you could follow a similar process. You're only on simponi, your inflammation is confined to the sigmoid colon which enemas can easily reach. So, it makes sense to hit it with rowasa and simponi. If that's not enough than add in an immunomodulator like 6mp, imuran/azathioprine and simponi. Simponi doses might also be variable, so you can ask about a dose or frequency increase.