Sorry to hear that you are not finding relief. I know how you feel...many of us do. I tried Remicade as a last resort about two years ago. I have had really good results. I felt better after my second infusion. When I started Remicade I had a lot of reservations. I worry a lot about the long term effects, and I would like to quit using it. Many people think I am nuts for wanting to discontinue this since it does seem to be working, but I just do not like being on medication at all.
I saw a doctor last Friday who practices functional medicine. Next month I will start the elimination diet along with some supplements which include heavy doses of fish oil and probiotics. The hope is that we will find something in my system that is messing with my immune system and correct it. If I can get to a point where I am feeling really good we will stop remicade. It may be a long shot, but I feel it is worth a try. I am a 34 mother of 3 young children. I want to be here for them. I don't want to end up with another problem down the road caused by Remicade.
This is my hang up. Not everyone feels this way. If you think that the benefits of Remicade outweigh the risk I would encourage you to try it. If not, keep searching for something else you can try. Good luck!!!