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Remicade for Ulcerative Colitis User Reviews (Page 2)

Reviews for Remicade

Commonly mentioned side effects
  • Lin...
  • Taken for 5 to 10 years
  • February 13, 2017

"Diagnosed in 2003 with ulcerative colitis. Started Remicade in 2010. Helped my symptoms, but developed discoid lupus in 2015. Doctor thinks it was brought on by the Remicade. Stopped Remicade and now taking Entyvio for colitis and plaquenil for the lupus."

10 / 10
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  • BIL...
  • Taken for 6 months to 1 year
  • July 7, 2016

"Only a few words. Please check your TB test for more than two or three times, especially when you are already on meds like prednisone and Imuran. Don't put your life at risk. I am suffering a lot because of the use of this medicine, Remicade. My personal, social, and financial life is destroyed. Sorry if I am getting emotional. It is true whatever happened to me. I wish that I would have never used this medicine."

1 / 10
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  • Woo...
  • Taken for 1 to 6 months
  • October 2, 2015

"Have had UC and Crohn's for about a year now and started off with a serious flare that had me bedridden. I was finally talked into trying Remicade, and a couple of days after the initial dose, I felt great with no pains. A week after the dose, I developed C. diff and was right back to square one. So, I got the C. diff taken care of and did a second dose, and the C. diff came right back. So, I got that taken care of again and did a third dose, and guess what? C. diff again. I told my GI I wasn't going to waste my time or money on it anymore. I went to the Mayo in Minn for a second opinion on my condition, and after days of testing, they said that I had already developed antibodies to the Remicade. I'm not sure the Remicade caused the C. diff, but now to Humira."

1 / 10
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17 Report

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Frequently asked questions

  • tkg...
  • March 12, 2013

"I was diagnosed with Ulcerative Colitis 3 years ago after being on several different meds for it. My doc and I decided to try Remicade. It works fine, I think, but the side effect for me was diarrhea. Plus, the cost I just couldn't afford it any longer. I am back on Asacol."

7 / 10
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  • Sk8...
  • Taken for 6 months to 1 year
  • April 23, 2024

"I was diagnosed with UC (pancolitis) in early 2023. Took budesonide and it did help some, then went on Mesalamine and had a horrible spiral of symptoms. Started prednisone and struggled a lot to taper it. Tried Entyvio and was told that I was a primary nonresponder, switched to Remicade. Was finally able to taper the prednisone and felt so much better after completing the loading doses. I'm about 8 months in now and am either in or very close to remission (didn't get scoped to confirm yet). My only real side effect is bad headaches, which I will take any day over the UC being out of control. My dose is 10mg/kg every 8 weeks and I am very happy with the medicine. I can leave the house without worry, no longer wake up every night with urgency to use the restroom, urgency overall is so much better, and I have gone from 15 BM/day to about 3-4 which is amazing. I can eat whatever I want except spicy or fried food and my gut does fine."

9 / 10
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  • Jos...
  • Taken for 1 to 6 months
  • October 27, 2020

"I've been on Remicade for four months, not very long I guess. After being in the hospital for a couple of days, I noticed almost immediate improvement after my first dose, and over the course of the next four months had good and bad days, mostly good until this past week. They increased my dosage to every four weeks. But even this whole last week, I've been in a major flare. I get my next dose tomorrow, and I'm hoping it works and everything will get back on track until the next dose. I never understand what's going on. All I eat is chicken and carrots or squash every day. I just want it to work regularly, and I want a normal life again :("

6 / 10
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  • Der...
  • December 28, 2015

"I was diagnosed with pan UC 2 years ago. My doctor gave me different medication that didn't work for me and made me worse. I lost 20 pounds in two weeks and didn't eat or drink anything because I would go to the bathroom ten times a day. My doctor finally recommended Remicade, symptoms went down, and a year later, I've started flaring up again. They increased the dosage, and I get it every month now. But while I'm writing this, my flare-ups started again, and it's been two weeks of bleeding, and my doctor is on vacation. I don't know what to do next, I don't want to have surgery."

4 / 10
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More FAQ

  • ton...
  • Taken for 1 to 6 months
  • May 10, 2021

"I have been on the medication Remicade for 5 months now, with no side effects. I eat everything and lots, except coffee (gives me the runs) and beans. I introduced salads back into my diet after the second month of treatments. I am almost back to where I was before I had my first and only flare. The only 'inconvenience' is that I have to use the washroom before going out just in case. I usually have a window of 3 to 4 hours between bowel movements. From the first infusion, I noticed improvement. In the stool chart, I am between types 5 and 6, which is understandable by the lack of fiber, which I am introducing slowly."

10 / 10
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  • Nol...
  • Taken for 10 years or more
  • March 6, 2021

"While Remicade did help with my UC, it also has serious side effects that were not in the black box info when I was taking it and can attest it caused me to develop a rare skin cancer that caused major constructive surgery and also attribute it to creating psychological issues like depression, which I had never experienced until after taking Remicade. I ultimately had to discontinue Remicade. Please be careful with this medication, there are serious side effects that will eventually show up."

3 / 10
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  • J56...
  • Taken for less than 1 month
  • June 25, 2023

"It is probably not fair for me to give a full review about this medicine, Remicade, because my 16-year-old boy just started infusion with a severe side effect almost 2 weeks after his first infusion. He lost balance, making him fall, and his entire right leg has little function, and his left arm the same. I'm waiting a couple of days to see if it goes away, he has trouble opening his hand. He has had UC since he was 8, and his doctor keeps bringing surgery to the table, and I can't quite get my head around that suggestion. I will let you know in his next infusion if this medication is right for him."

5 / 10
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  • mdu...
  • February 20, 2016

"I was diagnosed with UC in my late 20s and never had to take anything heavy like Remicade. I'm in my late 40s now, and for the past 3 months, I've been upgraded to severe UC. I was put on Remicade and just finished my 2nd round. So far, I have not seen major results. Very discouraged! I want to change my diet, and I'm trying, but I also have 3 kids, and it's hard to change everything completely and have them eat what I eat. Does anyone know if this medication works? How long should I give it?"

2 / 10
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  • Not...
  • September 17, 2015

"I was given Remicade while in the hospital. They premedicated me with Tylenol and Benadryl. After the Benadryl wore off, I broke out with severe hives from head to toe. I took Benadryl and then Zyrtec for ten days and neither helped the hives much. Thankfully, they finally went away. Horrible experience. I looked like I had a plague."

1 / 10
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  • Anonymous
  • Taken for 1 to 6 months
  • March 31, 2023

"Came down with severe UC in November 2021. 67 yrs old. Took mesalamine with no results after 30 days. Started Azathioprine in March of 2022. No relief. Took prednisone for 6 weeks. Seemed to knock it down some. Started taking Remicade infusions in April 2022. Had my 4th and last infusion in July 2022. By mid-August, I was hospitalized for 3 weeks with bacterial pneumonia, Histoplasmosis, and sepsis. A very near-death experience. Brought on by immunosuppressive drugs. I fired the doctor that prescribed all the immune-suppressing drugs. My new GI doctor won’t prescribe Remicade for me (even though he called it the gold standard for UC treatment). I would suggest NEVER, NEVER, NEVER take Remicade. I’m currently in remission. Taking both mesalamine Canasa and mesalamine Lialda daily for life, I’m told. So far, so good."

1 / 10
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  • Sar...
  • Taken for 1 to 6 months
  • January 22, 2021

"Only worked for 2 months, then I went into a severe flare again. Not worth all the time, stress, and money to only be able to get off of prednisone and feel normal for 2 months. I had developed antibodies after about 3 or 4 months."

1 / 10
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  • Sas...
  • Taken for 5 to 10 years
  • January 1, 2024

"This drug is truly amazing. I had been in the hospital for two weeks, bloody stools up to 10x a day, vomiting, unable to eat much, steroids oral and IV didn't work. Then I had this drug, and immediately the blood stopped, and I was back to pooping 2-3x per day. Changed my life for real, surgery would have been the next option."

10 / 10
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  • djc...
  • Taken for 2 to 5 years
  • November 14, 2023

"Several years ago, I was hospitalized for 3 months with a severe UC flare. I lost 70 pounds, required complete bowel rest and NPO/TPN for 2 months. I was diagnosed with toxic megacolon and very nearly required an emergency colectomy. It was bad; doctors later told me they gave me a '6% chance' of leaving without surgery. Though I was initially hesitant, I eventually consented to trying Remicade, and that drug eventually got me out of the hospital, with my colon still attached. I credit it entirely for helping me turn the corner. That said, after a couple of years of maintenance on Remicade, I started developing bad psoriasis and terrible pain in my chest, shoulders, and arms (diagnosed as costochondritis and psoriatic arthritis). Though we couldn't establish causation, I got off Remicade and the 'side effects' have appeared to subside. Recently, I had a mild flare-up of UC, so we're now looking for alternative therapies."

7 / 10
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  • Mva...
  • Taken for 6 months to 1 year
  • June 22, 2022

"No effect on my ulcerative colitis but made me extremely lethargic. Swollen in the face, bags under my eyes for months afterwards, and general feeling of a different unwellness added to experiencing UC."

2 / 10
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  • Mab...
  • Taken for 1 to 6 months
  • June 29, 2024

"My skin peeled. All over my whole body. After two weeks, I had a flare-up. At the present, I’m watching what I eat to see what foods may have caused it. I was on mesalamine but the doctor didn't refill my prescription after I got the infusion. I really can't say whether it helped or not."

6 / 10
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  • Car...
  • Taken for 1 to 6 months
  • August 10, 2021

"It worked the first time pretty well, my moderate to severe ulcerative colitis symptoms went away for the most part. I experienced flu-like symptoms after the infusion for two days. The second time, I experienced fatigue and joint pain for two to three days, and I could hardly move. I went to urgent care. The doctor said to stop taking it. My hair was also falling out by the bundles, as others mentioned. The doctor wants me to try Humira. Biologics have serious side effects, so I’ll take a risk and see what happens this time."

6 / 10
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  • Anonymous
  • April 29, 2008

"I've been on Remicade for 4 years for UC. I am in complete remission... It's unfortunate that it's an IV infusion, but I will gladly deal with this versus the effects of Ulcerative Colitis."

10 / 10
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  • Anonymous
  • Taken for 1 to 6 months
  • February 10, 2023

"It helps me with my UC and prevents me from getting very sick. One of the best medicines to take for UC."

10 / 10
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  • Anonymous
  • Taken for 2 to 5 years
  • February 28, 2023

"I have been taking it for over 3 years, and it has worked perfectly. No side issues either."

10 / 10
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