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Inflammation Higher After Starting Remicade

I was diagnosed with Crohn’s last fall. Initial treatment was to use Budesonide and Pentasa. Inflammation was still high and only minimal improvement in symptoms. On June 4, I started Remicade. I completed the 3 infusion induction phase on July 21, and my next infusion is scheduled for Sept 16.

I didn’t expect Remicade to magically fix all my problems at once. However, I absolutely didn’t expect things to get worse. I use an app to track symptoms/diet, and I’ve had diarrhea 50% of the time since July. I had labs done last week, and now my inflammation levels are higher than they’ve ever been. Took a COVID test yesterday and am waiting on results to rule that out.

My doctor has put me back on Budesonide and ordered more tests. I’ve been on Pentasa continually since December.

Has anyone else experienced worsened symptoms after being on Remicade?

Thanks for any insight. This disease is really wearing me down emotionally.

my little penguin

Staff member
Remicade can take a while to work
Think many months versus Pentasa takes 30 days
Pentasa works as a cream hitting the top layer of the intestine only
Buesonide is a steriod
Most need a bridge therapy of steriods or een until the remicade kicks in
So if you were only on Pentasa and remicade
Nothing was reducing inflammation
Ds was put on een as a bridge until remicade kicked in
Even then he needed 7.5 mg/kg every six weeks after the induction phase
He was 7
He is now almost 17
Biologics when given alone you tend to get worse until the med kicks in
Sometimes even with a baby dose of steroids you still get worse until it kicks in
This happened with Stelara for ds
But he has been great since it kicked in
Good luck
I am not on Remicade but have experienced worse symptoms on Humira , like a whole lot more flares than ever . I’m sorry I know it’s tough to go through this and I am still struggling with all mine as well emotionally it has drained me .
Although it might take a few months to fully kick in, it doesn't sound like it is kicking in at all. It doesn't work for everyone. You should be seeing some results. I believe it says that if it doesn't work in 12 weeks, then it won't probably work, but you still haven't reached that period of time, so who knows. It is frustrating and I hope you start feeling better. Good luck.