Hi fellow UCers -
I posted a few weeks back, but thought I'd provide an update. I was diagnosed with UC in 2009, had ileorectal anastomosis surgery, where most of my colon was removed, but my rectum and a stump of my colon was left and reconnected to my small intestine.
I've been mostly good since then, but I've had stubborn Proctitis in the portion of my rectum that's left, with small flares every now and then and continuing inflammation.
I started Entyvio on 9/20 and almost two months in, I haven't noticed improvement yet, but I'll give it four months. I had hoped to start Rinvoq or Xeljanz if Enytvio doesn't work, but my GI's assistant sent me this:
Something I have learned since we last spoke is that the FDA has put step limitations on Rinvoq and Xeljanz (the JAK family) that indicate patients must try a TNF inhibitor (Humira, Remicade, Simponi) for at least 3 months and experience failure before they will allow the JAK family. Entyvio is not a TNF inhibitor so it does not count in this stepping system. There is another oral option called Zeposia that has shown good promise in treatment. This med does not have the same step requirement. We are using this med more often with good results and the data looks good. said...
Is this true? I was unaware of this. And does anyone have experience with Zeposia?
UC dx in 2009
Ileorectal anastomosis in 2010
Now - Proctitis