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Severe pain after first maintenance dose of Remicade ?


My daughter is 14 years old and recently diagnosed with Small bowel Crohns. (Remicade and Prednisone started in July). She finished her 0,2,6 weeks Remicade dose. She had her 1st maintenance dose on 10/7 for 10Mg/Kg (Previously she was 6Mg/Kg dose of Remicade). Our GI increased her dose from 6Mg/Kg to 10Mg, since it was weaning off 3 or 4 days prior to infusion

However, few hours after her 10Mg/Kg dose, we ended up at ER due to severe abdominal pain and not able to pass gas and severe nausea. They think it is a minor stricture, they are still waiting for our main GI doctor to come back on Monday. (Current doctors are not sure). One of the weekend doctor thinks she might have Visceral Hyperalgesia. Not sure how an increased dose could cause hypersensitive nerves all of a sudden. Her previous location of Crohns was Small bowel, now in CT scan they saw inflammation in terminal ileum.

Has anyone experienced severe abdominal pain (WHich was previously controlled before her 4th does on 10/7 where her pain scale went from 3 to 7 or 😎. She is being given Fentanyl every 4 hours to control.

Any thoughts or if someone experienced same ? Maybe it's a minor stricture due to inflammation healing and not fibrotic stricture. Or maybe something else.

Any suggestions or feedback would be appreciated

  1. Hi,
    I have just joined the forum so I can help answer your question. I had a course of infliximab (which I think is the same or similar) back in 2010. I got really bad abdominal pains for a good few months afterwards. It resolved my symptoms however, in fact it was borderline miraculous as I very nearly lost my bowel. This medicine saved that from happening so I was quite happy to accept the price of pain. I also had a lot of pain in my knees at night, so much so I had to go downstairs and lie on the lounge floor in agony, so as not to wake my wife.

    It will pass and it does get better/easier.

    1. Thanks for your reply . Glad you recovered

      1. apologies, I have only just read your post. Just wondered what happened and how you're both getting on?
        ~ Sahara (Team member)

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