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Big flare up following new Infleximab treatment


Sat, April 20, 2024 7:19 AM

Long story short. My daughter was diagnosed when she was 9-10. She is now 16. After the first episode where she went into hospital and had strong steroid meds, she has been all these years on sulfasalazine…recently because her calprotectin count have been much higher than normal (above 3000) the doctor suggested Infleximab infusions with Azathioprine. After the first one she felt ok but soon went downhill after that..worse than ever before. Doesn’t get off the toilet, massive pains, blood stools, severe tummy pain like she is constipated. The doctor took her off Azathioprine for a bit because he said she developed an infection. She had her third Infleximab infusion but she is worse than ever before. We have never seen her like this! It’s heartbreaking! She hasn’t slept a full night for over 3 weeks. As soon as she eats anything, toilet, big pain!
Can anyone advise about Infleximab, are these things normal until you figure it out, etc? What can we do?

FPO gbc80
Joined Apr 20, 2024

Sun, September 28, 2025 11:43 PM

Reply posted for gbc80.

What you’re describing doesn’t sound like “normal adjustment.” While some patients take time to respond, this level of pain, blood, and sleeplessness suggests she may not be responding to infliximab or may have another complication. Please reach out to her specialist or take her to hospital sooner rather than later. slice master

FPO IanDale
Joined Sep 28, 2025