I got a rash after first remicade infusion. It started on my chest/ abdomen a few days after infusion then spread so it was pretty much neck to groin. Looked like I had some kind of disease. Gradually faded. Second infusion I felt a bit grotty. Third infusion I got a fever during infusion that wouldn’t go away, felt kind of drunk/ dizzy for a few days, nauseous, weird, really high resting heart rate. Told the doc no more and he switched me to entyvio which was fine and no side effects.
However I believe others get the rash and no other issues.
It’s a very individual disease. A drug that works beautifully for one does nothing or can’t be tolerated by someone else. Ditto diet.
I understand humira is very similar to remicade but made from something less reactive, haven’t tried it yet myself.
So I suppose just keep going, keep an eye on your boy, hopefully remicade will help but if his body decides it doesn’t like it, there is other stuff out there.
On a positive note, remicade in one dose dropped my systemic inflammation as measured by CRP level in blood from 90 to 2 (it’s supposed to be less than 5, my doc freaked out when it was 36 and put me on high dose steroids). So it is very effective and should be helping your boy already.
I hope all goes well for him xx