1. < Digestive Health

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.

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braninirvine | @braninirvine | May 18, 2024

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

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free73kja | @free73kja | Apr 5 9:36am
In reply to @guener "@thankful, I'm not sure why some doctors think it's necessary to change treatment plans/medications that work..." + (show)
@guener

@thankful, I'm not sure why some doctors think it's necessary to change treatment plans/medications that work unless there is a really good reason to do so (like new evidence of risks related to a specific drug, etc.). As long as the Remicade is working fairly well, and your wife is happy with the results, it seems like a reasonable idea to stay the course. As informed patient/couple, you can stay abreast of the medical information on long-term use of Remicade and other drugs/treatments. Some people stop responding to a biologic like Remicade after a period of time and *then* switch to another (like Humira, for example); while, everything I've read suggests that it's not generally recommended to start/stop a biologic drug without good reason, as that may impact drug efficacy in the future. Hoping your wife continues to respond well to treatments.

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I cannot take Budesonide long term, as it damaged my adrenal gland. After suffering with the Cilitis, my Gastro doc, says Remicade infusion is the next, and maybe only option for me now. I'll start it soon, but am very concerned about the suppressing of my immune system, and getting infections. But, I can't live like this anymore......it's been more than 15 yrs now.

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Melinda | @opai | Apr 6 8:03am

Anyone had trouble with Entyvio making your joints hurt they have upped my infusion to once a month,been on Entyvio for 2 years. Thank you

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jer22 | @jer22 | Apr 6 11:53am

Interesting,
My doctor wanted me to try Stelara, but way to expensive. So we tried Infliximab and after the 1st infusion had a very bad reaction.
So next was Skyrizi, which I have been on for about 14 months, seems to have worked well, All counts etc went very close to normal and seemed to be overall doing well with my crohn's.
Now the last couple months having slight nausea and stomach bloating.- So going to have some test to see if maybe the skyrizi isn't working now ???
Good conversation about crohn's subject
Take care fellow members and thanks to Cooleen for a good job.

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free73kja | @free73kja | Apr 6 8:18pm
In reply to @thankful "Hi Coleen, She has been on Remacaid for 2 1/2 yrs. since then. This Dr. had..." + (show)
@thankful

Hi Coleen, She has been on Remacaid for 2 1/2 yrs. since then. This Dr. had also had her on a lower dose and also on a drug called Uceris. She was having some strong side effects from that drug where she often had confusional episodes especially in the evening like she had been drinking and she had not? She was taken off this drug and the Remacaid dose was increased and as I said other than some morning issues she has been back to doing well. I have some concerns from the long term effects of Remacaid, but it is providing the help that my wife desperately needed and I guess that's what really matters. Any feedback would be greatly appreciated.

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Glad to hear Remicade is helping her
Mine isn't crowns, but I'll go ahead with it

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1 reply
summer66 | @summer66 | Apr 15 1:23am

My Remicade stopped working after about 7 years. They switched me to Humera and I have now been in remission for 11 years. On my last colonoscopy my GI Doctor said my intestines looked pink and healthy without any scar tissue as if I had no disease. Humera has the ability to heal the bowel. Though from what I understand there are even better biologic medications on the market now than Humera. Let your wife's doctor know that she is struggling and that she needs to move on to the next available medication. Better meds do exist. Get her on one and she will be feeling great in no time!

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rxjoey | @rxjoey | Apr 16 9:13am

Pardon me, but this is B.S. Biologics can reduce inflammation., and put your disease state in remission. Heal
Tissue, absolutely not. You cannot reverse the damage Crohn’s does to bowel tissue.

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free73kja | @free73kja | 6 days ago
In reply to @free73kja "Glad to hear Remicade is helping her Mine isn't crowns, but I'll go ahead with it" + (show)
@free73kja

Glad to hear Remicade is helping her
Mine isn't crowns, but I'll go ahead with it

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Question: I have good reason to believe my deep gut ache is from Budesonide.
It's Easter wind, and can't run it by doctor.
So, I'm going yo stop it at least for now

Thoughts, questions, advice??

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