Remicade ( or “Infliximab” as some might call it) is a relatively new medication first approved for Crohn’s Disease in 1998 that sometimes is used to treat ulcerative colitis patients who are not responding to other medications. Remicade is an artificial antibody, and its use has been approved by the FDA for treating other autoimmune diseases such as Crohn’s Disease, Psoriasis, Psoriatic Arthritis, in addition to ulcerative colitis.
People who decide to use Remicade receive the medication through infusions typically at a hospital or infusion center. The entire infusion process can take anywhere from 2-4 hours.
Wikipedia about Remicade/Infliximab:
Remicade patient assistance program : Help Paying for Remicade/infliximab
Remicade side effects can be found on the medication side effects database here.
If you have used/use Remicade to treat your UC, please feel free to submit a review on your experience and rating of the medication below.
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In 2016, I was put on Remicade during an emergency hospital stay. I was so bad off if I had waited another day I wouldn’t be writing this review. It worked and by 6 months I was in remission and stayed there. Off and on during the first two years I would notice I’d have fatigue and aches and pains a week before my infusion. It was stated that was normal and maybe Remicade level increase likely. By the start of my third year, I became incapacitated with severe pain in joints, muscles, and tendons. Physically I was a mess and then mentally with anxiety, depression. Only a very high temperature indicating for me inflammation was raging brought me my second hospital stay in 2019. The diagnosis drug induced lupus. A side effect only a very small portion of IBD patients experience. Not a category I wish to ever be in again. 6 months after being Remicade free, lupus symptoms have disappeared. Granted Remicade was the sledgehammer to the penny nail to eradicate my flare and help heal my colon yet it was the worse thing for my body. Lesson for others , please be your advocate and review side effects even the rare ones.
Oh and through all this experience my colon stayed in remission. I’m currently on a course with Entyvio.
Its an awesome drug thatworked wonders for my uc. It kept it in check. But....now Im being FORCED by the insurance co to do have it done at home.
I live alone and i feel vunerable. My drs only ever gave me asacol/predsione and imuran. When they didnt work they didnt want to see me anymore.
Why didnt they give me a diet plan?? Why does the drug cost $88,000???
But yes I do well on it for over ten yrs. In 48hrs my stomach stops rumbling
After working for around a year it stopped working.
My immune system started eating it. It was great while it worked though. Even if the infusion took 6 hours cause of the side effects.
I have been on a Remicade infusion every 8 weeks for 8 years and it literally saved my life. My only other alternative was colon removal as none of the other medications provided any relief. Occasionally I will have a very mild flare-up but I can usually associate it with something I ate. So thankful for this medication.
Was on Remicade for a number of years with it helping some.My body was processing the drug too quickly so infusions were shortened to 6 weeks. Still using the drug up early so quantity was increased.Did not feel the best after first increased treatment for several days. Several days after 2nd treatment thought I was having angina,turned out to be a heart incident with heart rate over 190 bbm with subsequent heart damage . Many trips to Emerg and 5 days in CCU I'm trying to get better but is going to be a long haul. Doing research ,with my heart condition I probably should have been switched to another drug instead of increased remicade.Have had 3 previous heart attacks over 20 plus years before this incident. Started Entyvio last week and my fingers are crossed. To be truthfull scares the heck out of me
I started Remicade immediately after a flare forced a cancelation of a trip to Europe 4 years ago. Whether it was the Remicade or the requisite benadryl that is administered before the infusion, it was effective within 48 hours and has been effective ever since. I'm of the belief that flares occurred with me because of stress. During my first infusion 4 years ago, I experienced relief from the UC symptoms immediately after the dose of benadryl.
I have been on Infliximab/Remicade for four infusions so far and it’s been helping me. Although I had a lot of stress last month so my colon has flared a little as I wasn’t being consistent with my diet too and I took up smoking for a week after a family member died suddenly. But the side effects for me have been severe itching mainly on my back and small bumps over my body. But that was only for the first three treatments. Now it seems to have calmed down a lot. I’ve also got two infections in my gums so have to have two teeth removed. But that might just be an aside. Otherwise I have been able to work fully and do as much as I need to survive.
I’ve noticed a massive increase in my sex drive, from nothing to finally being able to feel like I want to have a sex life again, whether that’s just since having an iron infusion and I have more energy back I don’t know. But it’s a very welcome side effect. All in all I say go for it. It’s given me my life back again. So I highly recommend.
Remicade was very effective in managing my UC symptoms. It also helped with my overall inflammation. The down sides of it are of course the immunosupression. And having to do IV infusions every 6 weeks (as I recall, it has been a while). I was on Remicade for 6+ years. Strangely enough, it also increased my libido right after my infusions. Weird, huh? On a more serious note, if you choose/need to take Remicade, or are taking it, be vigilant in addressing any possible infections. I had a urinary tract infection that got out of control and went into my kidneys, then sepsis, and then I ended up in the ICU. This is the case for any immunosuppression medications, so be vigilant.
I have been on Remicade for 9 years and it took 6 months to see any results and over a year to go into remission. I have taken Imuran during that time and not able to stop because I start to have symptoms. I would like to stop Remicade but fear to go back to being so sick. I understand if I stop taking Remicade I may not be able to go back on to it so I will continue to get the infusion until I can no longer afford them.
I was prescribed Remicade after a bad flare. It worked well for several months until I contracted kidney cancer and had to go off of it to enhance my immune system prior to surgery. Later, when I wanted to go back on it, blood tests showed that I had developed an antibody to the drug so it would do me no good.
My son started Remicade in December 2016. I am very thankful that since then he has had no flares. Unfortunately he started displaying other symptoms, extreme fatique, weight loss, sensitivity to light, rashes on his back and back of legs, etc. It was difficult to say what was the UC and what wasn't but slowly and after extensive bloodwork we saw that he was testing positive for lupus and the official diagnosis is Remicade Induced Lupus. We are now in the induction phase for Entyvio. We are told it could take 6 months, 9 months, even a year for the Lupus to go away.
Remicade healed her colon that had ulcers and was inflamed everywhere. She has not had bloody stool or extreme diarrhea since. She had infusions every 8 weeks. She had odd leg rashes, constant dull stomach pain, cystic acne on her face, lots of canker sores, throat swelling, brain fog, fatigue, and mood issues that i think are related to UC or remicade. Her trough levels of remicade left in her system fluctuates and she had small ulcers that increased her dosages and frequency to every 4 weeks. She may need to change to another treatment. So, although it has helped, I don't know if it is the best.
In a year's time, it did nothing! An every 8 wk treatment at nearly $30,000 a pop, became a 4 wk treatment after 8 months! That's been $120,000 on 4 treatments (in 4 months time), plus an additional $200,000 for a 9-day hospitalization FOR A BIOLOGICAL TREATMENT that has failed.
Now, docs say change it up. Switch to another biologic!
Uhm! No! How about... You're all fired!
I have a couple of noticeable side effects: extreme fatigue the day of the infusion and higher susceptability to bugs (sinusitis, laryngitis, bronchitis, all kinds of colds...)
Have been on it for 9 months.
I am mostly able to be really active and continue being an athlete.
Remicade was a logical, though at first feared, next step medication for my case. My flares have gotten really severe really fast and oral prednisone would do nothing to curb that.
On remicade for a number of years. Got off for awhile because I was in remission. Ended up in hospital and was lucky to get back on. Tried humira in between. Did not help me. They infuse me with Benadryl and then do remicade at a slow pace. In remission again for uc. My ibs still bothers me. Sometimes in a lot of pain. Take antispasmodics which help somewhat. My advice is to stay on remicade if it's helping even if you feel better
Just had third infusion. Symptoms have not completely disappeared, but it has given a lot of relief. Sometimes a little tired after the infusion, but nothing a good sleep won't fix! No other side effects.
My daughter is 19 and has been on Remicade for 2 years ago after one bad bout of bleeding that landed her in the hospital for 10 days. Since on Remicade, she has had no flares and only has an occasional stomach ache if she eats dairy or sugary foods. The only problem is that she is a very hard IV stick and she has had a hard time getting the drug into her. The doc wants to change her to Humara and I am worried that it won't control her as well and since she is in college, I am leery to make any big changes. Has anyone changed from Remicade to Humera? Experience?
I was on Remicade for eight months. I had about half a dozen infusions. The medication is bad for the lymphatic system, which is very important for immunity. I got off of it (against my GI's recommendation) as soon as I got into remission.
I did go into remission, but the last time I was hospitalized I was told I had built up antibodies to Remicade. My dosage was doubled, the scheduling was halved, 6MP was added to my regimen (to trick the body into not producing antibodies), and I was given an antibiotic for a possible gut virus. Who knows, I could have gone into remission due to the combination of Remicade and 6MP or the antibiotic.
I got pain in my hands and feet from the medication. I had two convulsions. I got a swollen lymph node. There were other things, but those could have been due to the Ulcerative Colitis or the steroids.
About six months later, I got extra-intestinal systematic inflammation of the soft tissues (muscles, tendons, eye, and possibly elsewhere). I had never gotten this before. Was this related to my Ulcerative Colitis, the fact that I had been on Remicade and 6MP, or both? My doctors don't know. I also got another swollen lymph node.
I had been on the Low Fodmap and SCD diets. I switched to the Autoimmune Paleo and SCD diets. The inflammation steady went away over another six months. The only medicines I took were pain killers for about three weeks and steroid eye drops for about a week.
I'm giving it three stars because after being on remicade for a year I went into remission,,,,BUT, I ended up with severe rashes all over my body. I have kept all the photos on my phone. I was in severe pain from these long term rashes and consequently was told I'm allergic to Remicade.
I was on asacol, prednisone, and mercaptopurine for ulcerative colitis and could no longer tolerate these meds. The hospital I was at told me I had to have my colon removed. So I was put on an ambulance and transferred to Stanford where they put me on Remicade instead. I have been on the medication for a year and a half. No more running to the toilet for me. I will say though that I have experienced side effects such as skin problems such as rashes on my body Dr. said eczema possibly from Remicade. I also experience occasional vomiting and nausea. I feel tired a lot but at least able to jog again without having to worry about going to the bathroom. I am very fatigued as well as having my equilibrium off balance. Basically the only thing Remicade has done is help me keep my colon and stop diahrrea.