My now 6yr old son has been on Remicade for a year and a half already. He has had no issues with it whatsover. We use FT with it as adjunctive therapy and have finally achieved remission. He is feeling great for the first time since being diagnosed.
Our ped GI told us we need 1-2 years remission (scope) before trying to wean him off the remi. Yes, very scary thinking about rocking the boat when there is smooth sailing. For now, we're going to enjoy him feeling well and not worry about changing things for at least another year. However, we feel remi long term is not the answer either.
Thanks for this post. I find it interesting the different approach GIs use as protocol for UC. "Big Guns first.....or last? In our case we limped along with the "little stuff" for a year while my son got sicker and sicker and was eventually hospitalized for two weeks needing blood transfusions (anemia), daily morphine, heavy dose iv steroids, irregular heartbeat (shock), severe weightloss, etc. He also picked up cdiff while in the hospital and couldn't kick that until doing the FT. I had to quit work to care for Jack during that time as he missed over 100 days of school and suffered constantly.
Sooooo, I think you use whatever guns you have to stabilze things the fastest. THEN, after the smoke clears....slowly wean off what you don't need. Thanks again for the post. I'm glad people have had success going off biologics. Seems like the protocol doing so is fairly similar. Long term scope remission is the key indicator.