Posted 6/17/2012 12:33 AM (GMT 0)
Hi all, I hope you have been doing well. I started Remicade about a year ago for moderate Crohn's. It worked immediately and within a week of my first infusion the pain I was having was gone. I am able to eat a great variety of foods without issue. The night sweats and the Erythema Nodosum incident I had stopped too.
On the flip side, unlike many other Remicade patients, I am catching every single cold, flu, virus, whatever and have been sick almost constantly for the last 6-7 months. This has affected the quality of my life, leaving me feel weak and without energy much of the time. I am fighting what was a simple cold that has turned into a possible bacterial upper respiratory infection and have been prescribed Amoxicillan which I have not yet started. I never required antibiotics before. I went to the gym, weighed more, and was stronger before I took Remicade. But, I realize that I had inflammation in my small intestine that was not getting better.
I asked the Doctor about stopping Remi and I probably agree with his assessment that the Crohn's could come back within 6-8 months of stopping. I have such a love-hate relationship with this drug. I worry that one day the infection I catch could be a very serious one. I'm wondering if anyone has voluntarily stopped Remicade for reasons similar to mine, and if another drug was able to keep the Crohn's in remission. Not sure what to do!