Posted 10/4/2015 6:40 PM (GMT -5)
We could die from a lot of things, both related to Crohns and not related. If we're lucky, we'll die of massive coronaries and not have to suffer terribly as victims in the American health care system. Dying is easy; suffering is hard.
I've never had cdiff so I can't help you there.
I've been on remicade for 5 years now, and I've only had a fever/infection 3 times and a zpack round of antibiotics got rid of it.
I always go into my infusion wondering if this would be the day that I have an anaphylactic reaction and what med I would turn to in that situation.
That's the only outcome that would make me stop taking remicade. It's not as great as it was the first 6 months, but it's still keeping me pretty healthy, despite the active fistula.
The possibility of side effects are always scary, but when you're at the point where you just want relief, you'll try anything. That's how I was when I first started taking it. I wanted to get rid of my fistula; the rest was just icing on the cake. It closed my fistula for six months and made me feel the best I've ever felt in 10 years. I had no idea how sick I was until remicade made me feel awesome and like a normal person.
A friend of mine was on remicade for a few years, had an allergic reaction and stopped it, then moved on to Humira. The Humira made all the hair on his body fall out. It was such a severe reaction that they discussed his case at a conference and wrote him up in journals. It was that rare.
If my remicade failed tomorrow, would I try Humira?
Probably.