Hi - I've had UC for 30 years and have been on Remicade for 6 years. Only 1 time I felt a little itchy, and when I told the nurse, she stopped the infusion and replaced the Remicade with a bag of Benedryl. The solution was that for the next 2 times I had a bag of steroids before the Remicade, but the steroids made me crazy, so I opt out of them. I feel Remicade saved my life, but I do have a few things to say.
1. cost - it is a battle to have my insurance approve this. Remicade is costly, and I've found that by getting the insurance to pre approve a year's worth (6/7 treatments) is much easier than getting a bill from the infusion place when my insurance has decided I don't really need it.
2. About a year after starting Remicade, I developed enteropathic arthritis. Basically - I was told that the swelling from the UC "has to go somewhere!" so it goes to my joints. It's bothersome about week 6 of my 8 week cycle. I can live with it, and once I get the infusion I feel terrific for 6-7 weeks. Remicade completely stopped the UC (at least for me) but left me with arthritis symptoms. Pick my poison, I guess.
3. It really does knock out your immune system. I catch everything.
I would rather be on Remicade and deal with these issues than be in the hospital with a flare that won't stop. I think it has saved my life.
Now, I have a question...what's a take down?