Sorry you are having to stress. After 3 courses of prednisone in just over a year and the inability the maintain a remission without the steroids, my GI also suggested Remicade. After doing my own research like yourself I was also concerned over the possible side effects. However I was desperate to get off and stay off of the prednisone and decided to give Remicade a try. I had my first infusion less than two weeks ago and am already almost completely symptom free. No noticeable side effects thus far.
So although I have had a very little experience with Remicade, I can relate with your daughter by being young and trying to manage this nasty disease. Although I try to eat as healthy as possible, I know the difficulty of being young and maintaining a strict diet that may or may not improve symptoms. I also know what it's like to go from taking no pills to 12 pills a day. Not easy.
So when I was presented the option to try Remicade, I decided it was worth a shot. Understanding and keeping the risks in perspective, I felt that the opportunity to finally achieve a steroid free remission was to good to pass up and am so far very happy with my decision. Although it was not an easy decision, it was a decision that I felt was ideal for me to get my life back to normal.
Being as sick as she sounds, I hope your daughter feels better soon. If Remicade is a possibility and she understands the risks then maybe she should give it a try. If not, I'm sure there are other options available for her.
Hoping the both of you get some relief soon.
D
Post Edited (UC Dee) : 6/8/2013 12:45:36 AM (GMT-6)