Posted 6/6/2011 11:59 AM (GMT -5)
All-
Just received my very first Remicade infusion this past Friday morning. Have been in the worst shape I've been in the last few weeks since diagnosis in October of last year. Frequency is 15-18x/day (includes 3-4x thru the night), blood and mucous every time (unless the blood dries up after too many bathroom visits in a short period of time), lots of pain and spasming. Meds: finished my Pred taper down to zero the day I started the Remicade, per doctor's recommendation (and the Pred never did anything for me, nor did I have any withdrawal issues). Switched from 4.8g Asacol to 2.4g Lialda last week to see if there would be any difference (and there wasn't).
Saturday morning (and mornings are always the worst), blood was a little less, but still plentiful. Pain/spasming was a little less, but still plentiful (both probably a 9 out of 10 where it was 10 out of 10 before). The rest of the day was the same (it's easier to tell smaller differences in the morning when things are much worse). Since then, now going on the 3rd day since the infusion, it's been the same- frequency, urgency, and mornings 9/10.
Questions for the Remicade folks- do you see continuing improvement after an infusion? Or does your condition peak after the infusion, and then a slow decline until the next one? Haven't spoken to my doc yet, and if this affects whether I can get the next infusion sooner...
Thanks!