About to start Remicade infusions

Posted by skolotilin @skolotilin, Jul 31, 2020

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?

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?

You might be interested in reading past questions about Remicade.
https://connect.mayoclinic.org/discussion/crohns-disease-2ed085/

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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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Thank you for your response.

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@thankful

@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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After my flu shot my loose stools came back in full force. Can flu shots do that for people with UC?

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@mariajean03

After my flu shot my loose stools came back in full force. Can flu shots do that for people with UC?

Jump to this post

Yes! I have UC (pancolitis) and last October I had my annual flu shot. Within 24 hours, I started to have loose stools and bleeding. It evolved into a major flare, despite being in clinical and endoscopic remission on Entyvio for 13 months. The past 11 months have been a nightmare with numerous hospitalizations and several courses of both oral and IV prednisone. I stopped responding to the Entyvio, was put on Sterlara, which did nothing and I'm currently on Remicade, which seems to be working. I had to schedule my Covid vaccine shots between the Remicade infusions and prednisone, but after the second vaccine, the flare, which had calmed down, became much worse. GI doc increased Remicade to every 4 weeks and things have once again calmed down. I am hoping the Remicade will work, or I am facing a proctocolectomy. This year I will NOT be getting a flu shot. I think our immune systems can only handle so much…

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