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Crohn's Disease Forum » Support Forum » Delirium with infliximab


09-18-2017, 08:26 AM   #1
rookie
 
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Delirium with infliximab

Hi everyone, I'm sorry if this is posted elsewhere... and I apologise for my ingnorance and terminology for this horrible condition. My partner isn't doing very well. He's been on infliximab for about a year and recently he had to go back to fortnightly infusions as his levels were not where they should be. He suffers with severe crohn's, and was recently told this is the last option for him. He can't have any more surgeries as there's basically nothing left to take & he can't have a bag again and his system is so sensitive he can really only handle panadol .... and panadol isn't making a dent on his pain levels. He vomits regularly from migraine/tension headaches and now having regular attacks of delirium. We were told without the infliximab he will surely die. Is this a likely reality? Does it come down to living a life where you're in immense pain and out of your mind or die? He's terrified of dying, and I don't know what I'm hoping for. Watching him struggle everyday... he's not living. He's 41 years old and was diagnosed at 16. Any help, advice, ANYTHING, please share it. Is there any hope for a better quality/life for him?
09-18-2017, 10:35 AM   #2
ronroush7
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Has he tried other biologics like Stelara, Humira, Entyvio, Simponi or Cimzia. He could ask his doctor about clinical trials.
09-20-2017, 10:18 AM   #3
rookie
 
Join Date: Sep 2017
His parents are meeting with the hospital this week. He responds badly with the pred/steroid they give him prior to the Infusion as well. I think he needs to be in hospital but he believes he is fine and is not aware that he is now behaving as if he is suffering from a form of psychosis. He isn't aware of all the strange things he is doing and saying and he is furious with just about everyone. Thankyou for your help, I will make sure the options you spoke of are mentioned. I am not completely sure what he has tried, if any of them... but I was in the appointment when he was told this was all they could offer due to his history. I hope your information brings a more positive outcome for him x
09-20-2017, 02:09 PM   #4
ronroush7
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I hope the best.
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