Posted 3/21/2018 8:43 AM (GMT 0)
Hi All!
So, I've been on infliximab (Remicade) for two years, I've had hives following infusions but that stopped around 6 months ago, and I've gone from 8 week to 10 week intervals because the level of drug in my system was high.
Up until 2 weeks ago I've not been too bad, a bit of a scare when I had the flu, but it's been alright.
I am now exhausted, like, falling asleep at my desk exhausted. Going to bed at 9pm the latest (up for work at 6am). I also feel incredibly 'full'. I'm also bloated, and my appetite is disappearing. I'm not really passing stools regularly but when I do (TMI WARNING!) they're quite 'muddy', unformed and stink!
I've ordered some meal replacement shakes. My next infusion is 19th April and my next GI appointment, assuming they don't cancel it, is 2nd May.
What should I do? I really don't know how to cope with this fatigue, it's worse than I've ever known it. I figure the shakes will give my gut a chance to rest, and still get food into me. I have been eating little and often, though have little desire to. Should I see my GP, or just grin and bear it?