It’s always been my plan to eventually get off of Remicade, but I figured I would first get through this flare, then give it at least a few more months before I tried that. But several days before my next scheduled dose (this past Monday), I started to question this plan. I started to think that it may be better to stop now. For one thing, Remicade has a long list of potential serious side effects, such as tuberculosis, lymphoma, and heart failure, not to mention it weakens the immune system. I’ll be risking inflaming my colon whenever I stop Remicade, so I’d rather take that risk sooner than later, and try to avoid the risks that come with staying on the drug. Also, I’m at home right now, with no obligations to school or a job, so this is really the best time to experiment. Next year, I’ll be in classes and then on co-op, possibly abroad, so I would certainly not want to screw around with my medications then. The year after, I’ll graduate, and I don’t know what will come after that.
Another benefit to doing this is that I’ll know more about the effectiveness of the holistic treatment versus the Remicade. If my flare starts to get worse, then I’ll go back on Remicade, this time knowing that it really is helping. There is a complication here, however; people who stop Remicade can develop antibodies against it, causing them to not be able to continue later. I talked to my gastroenterologist about this, though, and most likely, I would notice the effect of stopping Remicade and be able to start it again before the antibodies develop. No guarantees, though.
I discussed these thoughts with my parents and my doctor. My doctor’s recommendation was, as expected, to stay on Remicade, or at least get this dose. But he reminded me that ultimately, it’s my decision and he’s okay with me stopping Remicade as long as I don’t ignore signs of my flare getting worse.
So my final decision, after talking about it, thinking about it, and sleeping on it, was to cancel the Remicade appointment. We’ll see how it goes!