I think the side-effects are rare -- mostly people posting to the board are reporting either success (mostly) or failure with no adverse effects. When my GI heard from me that I was active on the UC sites, he warned me that people NOT doing well tend to post more than people who do well, so to try not to get too alarmed at a lot of negative posts. Well, if this is true, Remicade must be quite safe as hardly anyone seems to be posting negative effects. Of course, I think the longest anyone can have been on it, barring clinical trials, is just a few years.
I've been receiving infusions since July 2007 and it was only was I was able to get off the Prednisone. It took me a very long time to achieve remission, however, I was seing enough of an improvement that we kept at it. This past October my colonoscopy showed I was just about healed, only a final few centimeters were moderately ulcerated and Rowesa and Canasa seem to have set that right. Except for a few rough mornings now and then I seem to have achieved a good remission.
Your daughter will be closely monitored for ALL infusions, not just the first three. After more than a year my BP and temp are taken before infusion and every 30 minutes and I am checked on frequently. Nurses never leave the room.
Make sure you bring along plenty of quiet activities for her to do, she'll be confined to a comfy easy chair for several hours.
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!
11 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08; 7/5/08; 8/15/08, 9/26/08; 11/08/08; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D; Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro