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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@chicoco

I have Crohns disease and have alot of stomach pain. It feels like constant hunger pains. Anyone with similar pain? I take Imuron and it helps some, but I have to eat every couple of hrs to really keep the pain down.

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thanks for the info. I am going to talk to my doc. but have u ever had the pain that feels like hunger pains

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@chicoco

I have Crohns disease and have alot of stomach pain. It feels like constant hunger pains. Anyone with similar pain? I take Imuron and it helps some, but I have to eat every couple of hrs to really keep the pain down.

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thanks. I do take prednisone for short courses because I also have pulmonary fibrosis. but these pains have always existed

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@chicoco

I have Crohns disease and have alot of stomach pain. It feels like constant hunger pains. Anyone with similar pain? I take Imuron and it helps some, but I have to eat every couple of hrs to really keep the pain down.

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I've never had belly pain like hunger that was disease related.<br><br>

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@chicoco

I have Crohns disease and have alot of stomach pain. It feels like constant hunger pains. Anyone with similar pain? I take Imuron and it helps some, but I have to eat every couple of hrs to really keep the pain down.

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I asked my wife about your question about hunger pains and she has not had any symptom that felt like that. She also has been on Prednisone for short stents and at first she liked the extra energy boost she felt, but then she did not like it after a bit nor the puffiness she was experiencing. I would agree with jay_baruch about talking with your GI doctor about the pains. In my opinion, this should not be something to accept but rather should cause you to seek out a solution.

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About to start Remicade infusions
I’ve been on Entyvio but it’s not stopping flares without 40mgs prednisone, and doctor says I have to get off prednisone. Any suggestions or advice about Remicade?

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@skolotilin

About to start Remicade infusions
I’ve been on Entyvio but it’s not stopping flares without 40mgs prednisone, and doctor says I have to get off prednisone. Any suggestions or advice about Remicade?

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Hi @skolotilin, I know that @pinktower, @thankful, and @guener have experienced Crohn's. Perhaps they can share their stories with you. Are you looking to take Remicade for your Crohns or ulcerative colitis? When did you start taking Entyvio?

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@skolotilin

About to start Remicade infusions
I’ve been on Entyvio but it’s not stopping flares without 40mgs prednisone, and doctor says I have to get off prednisone. Any suggestions or advice about Remicade?

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@skolotilin- It's been nearly 20 years now that my wife has had Crohns and has been on Remicaid. She has really done well on it and rarely has any issues related to Crohns. She eats well and does not stay away from spicey foods on occasion. No one can really say what the long term effects of being on this drug will be, but now at age 63 she is continueing to do very well.
If you have any specific questions about her experiences, please don't hesitate to ask. Jim @thankful

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@skolotilin

About to start Remicade infusions
I’ve been on Entyvio but it’s not stopping flares without 40mgs prednisone, and doctor says I have to get off prednisone. Any suggestions or advice about Remicade?

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Thank you for your response.

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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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@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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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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