User Reviews for Remicade to treat Ulcerative Colitis
Remicade has an average rating of 6.8 out of 10 from a total of 36 ratings for the treatment of Ulcerative Colitis. 58% of users who reviewed this medication reported a positive effect, while 28% reported a negative effect.
“This medication Remicade made me in constant pain. I slept for two months 20 hours a day. I felt very depressed. My body was in pain everywhere and I was covered in a rash. Parts of my body have permanent nerve damage months after I got off it. My specialist told me it is hard to diagnose nerve damage, as if that matters. Is everyone a liar till a doctor proves it? This same specialists wanted me to go back on it. I said I really didn't want to go through that again. The specialist would not leave it alone. I Mentioned Covid-19 to him and he said it won't make a difference if I am off remicade or not. Oh okay, I guess all these tests were for nothing then? Now I am without a specialist. He then talked down about me to my family doctor saying I am refusing treatment. Now my family doctor is treating me like I am just wasting people's time. I suspect this is exactly how people become homeless. Do I have no rights? People should consider their specialist might value money more than your life.”
“Life-changing. I once thought I was doomed to a life of pain and suffering. Now that I've been on Remicade for 3 years, I feel like a normal human being again. My disease has become a small part of my life and I don't even think about it much anymore. I do seem to be slowly losing response. I had to increase the frequency of infusions and now I sometimes have minor symptoms around the time I am due for my next dose. I was nervous when I started this medicine because of the trips to the hospital for infusions and because my doctor at the time made it sound like a huge deal to be on this. I wish I had started it sooner!”
“Remicade literally gave me my life back 9 yrs ago. I was so ill ; in & out of hospitals, steroids, taking 20+ pills a day & I was still extremely sick. I finally went to Philly (where on my first visit, they were planning my surgery to remove my colon..during that conversation I stopped listening.) My dr. suggested I give Remicade a try - before surgery. At that point, I would have done anything. Honestly I did not believe anything would work since I had this disease for years and could barely function. The Remicade worked like magic - it is liquid gold - I have never had any side effects or adverse reactions - I have been in remission ever since!”
“I had a second relapse of Ulcerative Colitis in 2005. I spent 2 weeks in hospital, been given a fist full of medicines and sent home. Nothing worked. I contemplated having surgery to free me of the disease and wear an ostomy. To my eternal gratitude, my Gastro MD suggested Remicade. After my last colonoscopy in 2013, he said if I had not seen you as sick as you were... your colon looks perfectly healthy. I will accept the side effects (I have experienced none as of yet) to have my life back. Remicade has assistance programs to help those who need it. I am not a spokesman, I do not sell this. But I use and will as long as I can. I wish this medicine was around for my Dad as he suffered with Crohns and Colitis for years.”
“My younger brother was on remicade for 10 years , and yes it helped him with the uc but he just passed away from cancer and liver failure at 27 years old most likely from the years of remicade. So I am leaving the warning to be careful and think that this is just some miracle drug. Everything has consequences”
“I have been getting Remicade infusions for 4 1/2 years. I went into remission within a week of my first infusion. My only side effects I have are headaches and some chest pain off and on. But considering how my life was before Remicade I can handle it for now.”
“I have been diagnosed with UC for about 15 years. I have been on various forms of mesalamine for the entire time. On and off of prednisone, 5-60 mg a day. Remicade had me close to remission for 5 years. While on Remicade I was able to drop the prednisone. For that, I'm grateful for the Remicade. After about 5 years it suddenly lost it's effectiveness. I then went back to the Prednisone while waiting to get approved for Entyvio. Remicade was given via IV every two months. Entyvio did absolutely nothing for me. I'm now on Simponi which is starting to show promising results. It supposedly works on the same inhibitors as Remicade. A lot of trial and error. Be patient and keep the faith.”
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“Remicade has been a miracle for me. Last year this time I was totally desperate and thinking of get rid of my colon due to severe UC. Now, I am totally healthy and no sign of UC!!! If u r suffering from UC, give it a try without any doubt. Thanks to science and researchers. Of course, it takes couple of months to feel the full effect of it, but as soon as I got the first infusion I felt its positive effect. Its combination with Azathioprine works much better.”
“I was diagnosed with uc in my twenties. For many years I maintained with various medications and only a couple of relatively minor flare ups. Suddenly at age 56 I had a severe flare up that did not respond to prednisone. Removing colon was brought up. After much suffering and weight loss for about 3 months I was put on Remicade by my wonderful GI. Within a couple of weeks my condition began to improve. I am now almost 7 years with infusions every 8 weeks. I am very grateful for this medication, although I do wonder if my immune system is weakened. It really doesn't compare to almost dying or having major surgery. I know it doesn't work for everyone but for me it was a miracle.”
“I have only been living with this UC for about 5 months and couldn’t find anything to help .After 1st infusion notice a big improvement till I hurt my back and took a lot of Ibuprofen and Aleve for the pain and had major flare up had my 2nd infusion and then that clear up by about 80%. Now have anxieties but not from remicade going for my 3rd infusion in 2-1/2 weeks then every 8 weeks. Prayers and positive attitude and good diet I will be fine”
“I was diagnosed with Ulcerative Colitis about 12 years ago and have been on Remicade for about 2 of those years. I am still taking Asacol and getting the Remicade infusions every 8 weeks, but I feel about 90-95% better since being on Remicade. I have not noticed any real side effects from taking Remicade, but I have heard from other patients that they have had them. I still think that if I had any side effects (with the exception) of major ones, I would stay on it as long as I can. The only thing I honestly can complain about is the cost. I would say if anyone is being told that it is an option for their ulcerative colitis or any of the other issues that are in the same family (IBS, Crohn's, etc) it is a huge help.”
“I used Remicade for a little over a year and it helped tremendously. While I was on it I never felt better. The only reason I had to stop taking it was because I lost my insurance after I was laid off. My doctors office found a program to help pay for the treatments and I will be going back on the Remicade soon. Can't wait.”
“I had severe pancolitis and was hospitalized for 2 weeks. They started me on remicade because none of the mesalamine ever worked for me. It worked at first really well and worked well for about 2 months. After that the flare ups became so bad they were giving it to me every week. Even that didn't work this time around so the only option I had was surgery. The doctors didn't want to try other medications since I already had so much remicade in my system. After the surgery I immediately felt great. Some people might not like the idea of having a ostomy but I have gotten use to it. I did have the opportunity to get a j pouch, but one of my dads friend had a very bad experience so I decided not to.”
“I was diagnosed with UC in March 2015 out of nowhere.. Rapidly got bad and needed to be hospitalized for a week to get the flare under control.. Was given heavy doses of steroids (awful) and they did nothing to help.. I was released from the hospital after a week and symptoms were still bad.. About 2 weeks later after not being able to eat and losing 20lbs I was barely able to walk and was readmitted, this time I went to Columbia in NYC.. I wasn't able to eat for the full first week in the hospital and symptoms were steadily horrible.. My doctor decided to give me a loading dose of remicade and the results were almost immediate! I have been on remicade every 8 weeks since and don't have a single symptom of UC It's been a life saver!”
“I was diagnosed 3 years ago with severe Ulcerative Colitis. Asacol and predisone worked at first, but after each outbreak the medicines seemed less effective. My last attack left me under 100lbs, severely anemic, and in enough pain that I needed to be kept in a continuous Dilaudid-induced daze. So many people have told me how terrible Remicade is and that I just need to, "find the right diet". If diet works for you, great! Remicade was the only thing that worked for me. The cons: It's expensive, but luckily my insurance covers it. It's inconvenient to go to the hospital every 6 weeks. I havn't noticed any side effects except hair loss at first, but now my hair is growing back. I've been told that the hair loss could also have been from all the weight loss.”
“I could not get the colitis under control for 18 months, finally my doctor prescribed Remicade. Well after the first treatment bleeding stopped and I feel like a normal person again. Only small side effect for me is I feel a bit dizzy just after the treatment”
“Severe UC flare hospitalized, prednisone intravenous didn't do anything. Remicade infusions every 4 weeks to start, now every 8. It worked within one week and after about one year I was in complete remission with no sign of UC on my colonoscopy! The IV is okay, very expensive, but you can go to the Remicade website for help paying deductibles no matter what your financial situation is. I wish my dr told me that before I spent $10,000 in deductible and copay this year! I guess it was worth it all around.”
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“I was diagnosed with ulcerative colitis in Nov. They thought they that had it under control, so after being in the hospital for three weeks, I went home for two and almost died! I went back and stayed for over a month. The docs were trying everything with no answers, then they told me about Remicade and said it was for Crohn's disease, but we could try it out and see because it was my last hope. I really was happy to see that it was working and in the first of Jan I went home! I have had a kidney stone because of it, and it has acted up which made docs think it was either my appendix or diverticulitis. I still take it every 8wk through I.V, but the only other problem that I'm experiencing is hair loss now and I don't know if its the Remicade.”
“When my daughter was 13, she had a sudden and severe onset of UC. She was hospitalized for 2 weeks (had constant pain, couldn't eat, and was going to the bathroom 15-20x/ day). She was given IV steroids/medications with no improvement of symptoms. The day after receiving remicade, her pain was gone and she wanted to eat. She went into complete remission and has had no symptoms for the last 4 years. She does remicade infusions every 10 weeks. It has been her wonder drug! But my other dtr was diagnosed with crohns a year later at 11. Her onset was slower and she was put on various medications first. Remicade worked for her for several months but then became less effective even with increasing dose and frequency so she was switched to humi”
“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 :(”
“I've been getting Remicade infusions for about 15 years. It is the ONLY drug that helped me. I'd been in remission for the past 5 years. Last infusion, my insurance wouldn't pay the hospital. After back and forth communications from doctor, hospital and insurance companies..Medicare...Blue Cross/Blue shield,..Tricare....doctor decreased my max dosage to 1/2 dose. Now I'm having a flare. It's a wonderful drug but the cost is exorbitant...especially for old people like me. Sure was good while the Remicade ride was working. Good luck all”
“The medicine works great. I've been on it for almost 2 years. The only thing is I'm getting a lot of the side effects. The one thing that is very bad is the itching on my arms that have lasted a long time. No medicine has helped so if anyone has any ideas on how to stop the itching please give me ideas. The only good thing about this medicine is that it's helping my ulcerative colitis.”
“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.”
“only few words please check your TB TEST FOR MORE THAN TWO OR THREE TIMES SPECIALLY WHEN YOU ARE ALREADY ON MEDS LIKE PREDNISONE AND IMURAN ....DONT PUT YOUR LIFE ON 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 WITH ME .........I WISH THAT I WOULD HAVE NEVER USED THIS MEDICINE.......”
“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.”
This information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.
Learn more about Ulcerative Colitis
IBM Watson Micromedex
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Mayo Clinic Reference
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