I thought one man's experience with this newly FDA approved drug might be of benefit to others: Tomorrow I will be 4 weeks into taking Xeljanz in an attempt to taper off of Prednisone for a flare that started in April. Most of the time from April on I've been between 40 mg and 30 mg of Pred. I was DX with severe pancolitis last November and have been on Remicade for several months to no effect. Having started Xeljanz on Oct 11th, I noticed results after 3 days - frequency and urgency decreased... intestinal gas increased... by the end of the 1st 5 days, I started tapering Pred (in anticipation of this drug I had stepped down the week before from 30 mg to 20 mg Pred). Long story short, this Tuesday was my last day on Prednisone! I'm free (for now) from the devil's tic-tacs
My experience is the following. Urgency very workable... Frequency reduced. Blood has appeared from time to time, but only in the morning. What is interesting is this: I have 2 main BM "events" morning and night. These "events" are where I need to do a BM, but it's small, followed by passing of a great deal of gas... another small wave, etc, etc... then the main event and done 30 minutes later. Then really nothing for the remainder of the day... the small BMs are liquid, the main event is solid-ish, but most importantly (gross, but you all will resonate) - it smells "right". UC BMs smell just wrong... anyway, for me. As I read for the trials of this drug, ~18% of non-placebo will achieve remission after 4 weeks. 40% after 1 year. However, in the 8 week group 31% achieved deep mucosal healing. Suffice it to say, I'm highly encouraged, however still waiting for BCBS insurance to approve after receiving my 1st rejection. If approved, I'm ok with this new normal. Anyway, hope this update helped those dabbing with Xeljanz...
01/16: Given Clindamycin for staph infection in stye that kicked off this whole UC fun; C-Diff twice; Flagyl then Vancomycin 250mg fixed
2/18: Severe Pancolitis confirmed - Mesalamine 1.2gm + Uceris 9mg 1x day ok
4/18: First flare; Pred 40mg stepdown no good
9/18: 6 Remicade treatments done - no good, unable to lower beyond 30-40mg Pred
10/10/18: Starting Xeljanz 10mg twice day & try to taper Pred