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Crohn's disease - Question about Remicade (Infliximab)

Posted by thankful @thankful, Jun 21, 2016

My wife suffers from Crohn's disease and she was placed on Remacaid years ago. It really helped her and she had to have surgery for a Fistula early on that was a result of the Crohn's. After being on Remacaid for a few years her symptoms were nearly gone and her Gastrologist asked her to take a blood test that he said was the "gold standard" to determine whether she still had or ever had Crohn's. It came back negative and over the next several months he weened her off the Remacaid.

Within the next few months the symptoms returned and after having another Colonoscopy, he apologized and put her back on Remacaid. This doctor shortly retired and her new doctor continued the Remacaid. She is back to where she was before, but she has those symptoms now that her mornings are usually a tough time for her with several running trips to the bathroom. Sometimes unsuccessful.

Does anyone have any suggestions as to how to proceed? Thank You!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 9, 2022
In reply to @bikerjack "Remicade complications I have a very high level of Remicade in my system supratherapitic. I am..." + (show)
@bikerjack

Remicade complications
I have a very high level of Remicade in my system supratherapitic. I am having multiple symptoms like itchy rash, tingling in arms and legs on both sides, plus many others. Remicade is to treat my long-term Crohn's. I was on Remicade for awhile with no problems. Insurance switched me to a bio similar problems started. Switched back to Remicade and problems got worse. Anyone had a similar experience? Anyone with an idea to resolve the situation?

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Hi @bikerjack, I'd like to add my welcome as well as introduce you to @skolotilin @pinktower, @thankful @guener and others who have experience with Remicade and Crohn's disease. You'll notice that I moved your question to this discussion so you can read their past posts and connect with them easily.
- Crohn's disease - Question about Remicade (Infliximab) https://connect.mayoclinic.org/discussion/crohns-disease-2ed085/

Like @becsbuddy, I'd be interested to hear if your doctor is considering changing the supratherapeutic dosage.

REPLY
bikerjack | @bikerjack | Mar 10, 2022
In reply to @becsbuddy "Hello @bikerjack I’m very sorry to hear about this drug reaction you’re having. I included a..." + (show)
@becsbuddy

Hello @bikerjack I’m very sorry to hear about this drug reaction you’re having. I included a link to a remicaid site which lists the side effects. If you haven’t done so, you might want to mark those that you have so you can get a better picture.
https://www.rxlist.com/remicade-side-effects-drug-center.htm
What has your doctor said? Does he agree that you have a ‘supratherapeutic’ amount in your system? What is the plan until you get the excess remicaid out of your system?

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I'm going to give it time to clear my system and see if the symptoms go away. Hopefully they will although my Crohn's may flare up in the meantime. Then we will reevaluate biologics. My Dr said it was at a supratheraputic level. I expect I will try a different biologic when this all clears up.

REPLY
braninirvine | @braninirvine | May 18 9:06pm

What about newer immunosuppressive suppressives like Stelara? Any new information is greatly appreciated.

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