Infliximab for Ulcerative Colitis User Reviews (Page 2)

• tuco
• Taken for 1 to 2 years
• May 4, 2016

Remicade (infliximab) "Initially helped me for around 1 1/2 years, then began to lose its potency, and last two treatments had bad reaction night of treatment. More important platelet count went from normal to around 45,000. No longer taking Remicade and my platelet count is normal now."

• JLano
• August 31, 2010

Remicade (infliximab) "Have had Ulcerative Colitis for 4 years. 3 years ago started Remicade at 5ml per Kilo, with only mild help. Only other choice was surgery. Switched Doctor who immediately doubled dose to 10ml (which I think is the normal dose) so I probably was under-medicated for 2 years. However higher dose has not helped much more. Have had almost no side effects. One allergic reaction early on to the infusion. Only minor problem is the skin on my hands and arms seems very thin and very easily bleeds from the slightest scratch. So for me it has not worked as hoped. "

• 53CEO
• Taken for 1 to 6 months
• January 19, 2017

Remicade (infliximab) "After losing a substantial amount of weight and blood, in the hospital for a week two transfusioins. diagnosed as Pan Colitis / Ulcerative Colitis. 60 mg Prednizone and the bleeding stopped at day 5. I returned home and was pressured by my GI to accept Remicade. I was skeptical but sold myself on the fact of the huge numbers of folks it helps. After two succesfull infusions I was set up for my third of which I expereinced an allergic reaction in this order, itchy palms , itchy feet , itchy everywhere, needed bowel movement , almost fainting , fever, chills and tightening of throat. Once home extreme right leg pain, hand joint pain, loss of hair. (Serum sickness) now on Balsalazide , cautious diet and cannabis nightly & 6 months no issues"

• Linda...
• Taken for 5 to 10 years
• February 13, 2017

Remicade (infliximab) "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."

• tkgoc...
• March 12, 2013

Remicade (infliximab) "I was diagnosed wit 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."

• Woodj...
• Taken for 1 to 6 months
• October 2, 2015

Remicade (infliximab) "Have had uc and chrons for about a year now and started off with a serious flare that had me bed ridden. I was finally talked into trying remicade and a couple 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 3rd 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."

• Derek
• December 28, 2015

Remicade (infliximab) "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 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 to do next, I don't want to have surgery."

• JosephK
• Taken for 1 to 6 months
• October 27, 2020

Remicade (infliximab) "I've been on remicade for four months, not very long I guess. After being in the hospital for a couple days I noticed almost immediate improvement after my first dose, and over the course of the next 4 months had good and bad days, mostly good until this past week. They increased my dosage to every 4 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 whats going on. All I eat is chicken and carrots or squash everyday. I just want it to work regularly and I want a normal life again :("

• In Ca...
• Taken for 1 to 2 years
• September 24, 2021

Remicade (infliximab) "UC at 65 years old. Four years of bleeding, pain and sleeping on the bathroom floor. Tried the usual, including another biologic. Six months of Remicade had no effect. A specialist suggested I try a high dose of Remicade before opting for surgery. I was well after a few weeks and have been symptom free for two years."

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

Remicade (infliximab) "Came down with severe UC in November 2021. 67yrs 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 Messalamine Canasa and Messalamine Lialda daily for life I’m told. So far so good."

• mdubb
• February 20, 2016

Remicade (infliximab) "I was diagnosed with UC in my late 20s and never had to take anything heavy like Remicade. In my late 40s now and for the past 3 months, I've been upgraded to severe UC. 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 its 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?"

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

Remicade (infliximab) "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."

• NotAh...
• September 17, 2015

Remicade (infliximab) "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."

• Nole
• Taken for 10 years or more
• March 6, 2021

Remicade (infliximab) "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."

• djchoi
• Taken for 2 to 5 years
• November 14, 2023

Remicade (infliximab) "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."

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

Remicade (infliximab) "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 introduce salads back in 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 type 5 and 6, which is understandable by the lack of fiber which I am introducing slowly."

• Sara
• Taken for 1 to 6 months
• January 22, 2021

Remicade (infliximab) "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."

• Ed N
• Taken for 6 months to 1 year
• August 25, 2023

Inflectra (infliximab) "Treating ulcerative colitis. Entyvio worked 3 1/2 years - stopped working. Switched to Stelara - barely worked for 6 months. Switched to Inflectra 8 months ago - working great so far. Prednisone always clears up flare-ups - but at 10 cents a pill these infusion drug companies hate it & put out studies about the evils of steroids."

• Mva
• Taken for 6 months to 1 year
• June 22, 2022

Remicade (infliximab) "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."

• J567
• Taken for less than 1 month
• June 25, 2023

Remicade (infliximab) "it is probably not fair for me to give a full review about this medicine Remicade, because my 16 years 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 couple days to see if it goes away, he has trouble to open 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."

• recyc...
• Taken for 1 to 6 months
• March 10, 2023

"I had two doses then the hospital postponed the third (due to it being Christmas). At Christmas I suffered the worse case of UC ever, totally ruined the holiday for me so I didn't return for the third dose in January. I wasn't aware of the side effects until my long hair started falling out, it was everywhere. Its now four months on, and my hair slowly growing back thanks to hair vitamins. I still have UC, but its manageable at the moment. I would advise anyone to check the side effects before taking the infusion. It doesn't cure your UC, merely holds it back, as shown, to my detriment, in my condition in December when I didn't have my 3rd dose. Too many health risks for me to want to try again."

• maddi...
• December 6, 2016

"I was on Infliximab infusions for 4 years, and have only stopped them as of last week. I was diagnosed when I was 14 with severe ulcerative colitis which seemed to only respond to infliximab. For 4 years it was extremely effective in keeping my UC at bay, however the effects of the immunosuppressive were quite severe. This year I have gotten what feels like every infection under the sun. For 2 years I was begging my doctors to take me off the infliximab because I was constantly battling some pathogen and on ridiculous amounts of antibiotics. The constant infection was far worse to deal with than my UC. Thankfully I've been taken off it as in the past 4 months I've been hospitalised twice with menengitis as severe pharyngitis"

• Chris...
• Taken for 6 months to 1 year
• April 4, 2018

"I was started on this medication while in hospital for a very serious flare up of Ulcerative Colitis. After I began recovering I was started on infliximab. After dosing, waiting for improvement and then dosing again and waiting for improvement they were going to give me a third dose in less than a week. My condition hardly improved. I was still bleeding, in discomfort and using the toilet more than 15 time a day. Subsequently, I was started back on Prednisone and released within a week. I was also prescribed outpatient infusions of infliximab every few weeks. After six months of still taking Prednisone, I simply stopped going for my infliximab infusions. My condition continued to improve with simply the low dose of Prednisone. I never felt any side effects from the infusions... like not a single strange or tingling feeling. It also did very little to nothing, to improve my clinical condition."

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

Remicade (infliximab) "It worked the first time pretty good, 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, joint pain for two- three days and I could hardly move. I went to the urgent care. Doctor said to stop taking it. My hair was also falling out by the bundles as others mentioned. Dr wants me to try humira. Biológics have serious side effects so I’ll take a risk and see what happens this time."

• TWuk
• September 10, 2013

"I'm 17. I was diagnosed with Ulcerative Colitis only 3 weeks ago, I've been in and out of hospital twice. I went back in because the oral steroid medication wasn't working. They told me about infliximab and said its a different type of medication to treat Ulcerative Colitis. I had my first infusion the night before I came out of hospital. The next day they discharged me. It's been 2 weeks now and all my symptoms have gone completely! I couldn't believe how well it worked. I was quite lucky to be given it due to the fact they usually don't give it too people under the age of 18. They want to try me on another medication because its so expensive. I will persuade my doctor to continue me on it. Thankfully I live in the UK so it's free for me!"