So 4 weeks after my 3rd Remi infusion, I have seen some improvement, but not enough. Still bleeding, still mucous. So I just started 6mp yesterday (50mg) and am terrified. Terrrified of getting pancreatitis, terrrified about
losing my hair, terrified about
the affects on my blood counts, terrified about
the long term effects, but mostly terrified that this won't help get me to remission either.
Also... I have been scheuled for my next remi infusion at 10mg/kg next week which will be 5 weeks from my last. My GI has also refered me to an IBD specialist at the University of Pennsylvania to get a "second set of eyes." That terrrifies me too.
DX Moderate Pancolits 7/2009 - fairly stable til 2/2013 on 6 lialda/day, currenlty in bad flare (improving)
Current meds: Remicade, 6mp - 50 mg, cortenema, hyoscyamine
Previous: Lialda, Asacol, Apriso, Rowasa, Prednisone, Canasa, Uceris
Diets: Tried Gluten Free+Dairy Free, SCD