Remicade and Ulcerative Colitis Question

Hi UC’ers,

In my lifetime I have had three flare-ups of Ulcerative Colitis. The first in my late 20s, the second when I was 57, and the third when I turned 60.

The second time landed my in the hospital where they tried everything but then they tried Remicade. It worked. I got well enough to get home where I ate baby food for two weeks then I went to Hypocrates Institute in Florida for two weeks of raw food diet care. I stopped the Remicade.

I thought it would never come back–but it did. Now I managed to get my first infusion of Remicade which thus far has not helped. I am scheduled for two more treatments.

Medication Question:

Has anyone had an experience with Remicade where it took more than one dose before it started to work after stopping?

Submitted By “Steve B” in the Colitis Venting Area


12 thoughts on “Remicade and Ulcerative Colitis Question”

  1. Hey Steve,
    Great question. I don’t personally have any experience with starting and stopping of Remicade, but, I will try to find an answer today as I’m heading to Stanford Univerisity to hear a few thesis defenses given by a friend who is completing his PhD in Immunology. I’ll try to ask that question if I can get a moment with someone there and see if they know of anything or studies about that question. I can’t promise anything, but I’ll sure try, it would be great to hear what the researchers have to say about that since the medication is so widely used for so many other “auto-immune” diseases.

    1. Hey Steve, I apologize, but I did not have the chance to ask any questions today, but I hope from some other comments you are getting some help with your questions. -Adam

    2. I have been on remicade for 4yrs now and would like to go off of it. Havent had a flare up in months since I stopped eating wheat. Does remicade work if I stop and start it back up if I have flar ups in the future

  2. Been on remicade for almost 2 years and it really does help, especially my uc related arthritis. But it didnt really kick in until 2nd and 3rd treatments so give it a while. Also beware or at least i heard that if you quit sometimes it wont work the second time so it may take longer. I would also consider the SCD diet–i just try to stay away from any flour and that helps–also try eating a good(rib eye type steak) 2-3 times a week (just 6-8 oz). Then, the single best thing you can do IMO is try the Nano silver (not colodial)–that put me into remission in 4 days! I am 66 and been diagnosed 3 plus years ago (never should have quit smoking!!! kinda just kidding! good luck

  3. hi Steve,
    Yes, it took my body about 3-4 infusions before it actually took affect. It was frustrating in the beginning but once it kicked in it was beautiful.

    Good luck,

  4. Hey Steve,
    I have been on Remicade for 4 years now, but have never missed a treatment. My doctors are very anti- skipping treatments even though I am doing well because the body may begin to reject the meds if you take too long a break in between. However, when I first started Remicade it took a couple treatments to really get rid of the flare up.

    God bless, hope it works for you soon.


  5. Hey Steve! Hang in there…I never stopped Remi but from having severe UC and being hospitalized it took 3 infusions before I noticed any positive change and it took 6 infusions before everything was ‘quite normal’ again. Best of luck!

  6. Hi steve. I’ve had UC for just under 7 years now and Remi ( or Infliximab) is the only thing that works 100% for me. I was symptom free for over a year so my doc stopped it and now I’m flaring again. Sadly due the UK NHS being crap and short of funding, my doc is making me jump through the pred and methorexate hoops before he’s allow to use Remi. If you’re on it, stick with it, it really is the best drug (IMHO). Good luck.

  7. I am on Remicade for the first time but “yes” it took me about 6 months of treatments to put me into remission. When I was in Iraq working in 2010-2011 people used hand sanitizers that were affixed to the outside of the port-a-john’s and unknown to me, C-diff is in that 1% of bacteria that these liquid products do not kill. Not only do they not kill this bacteria, but C-diff is able to live outside of the body for up to 6 months. Colitis was the diagnosis going into Iraq and I was on Prednisone, which worked marginally. Still bleeding at times, but not to the point of an E.R. visit and for 10 years, this was what “remission” looked like for me…a toilet filled with red blood from the distal end of my colon. When I came home, my Ulcerative Colitis seemed to worsen and I was taking trips to the restroom 20-30 times in a shift, and was fired. The bleeding was horrific and put the fear of God in me. My gastro doc was a Physicians Assistant and he switched medications to attempt to get my colitis in remission, ultimately starting me on chemo. As a last resort, he started accusing me of not taking my medications and put that into my permanent record. I was desperately taking the medication and sitting there with a medical non-compliance entry, which is not good if you want to obtain medical insurance and are unemployed. Near death, I was vomiting on the toilet, bleeding very darkly, and the diarrhea would not let up. I sat there until I blacked out. My wife called a friend, who got me dressed and took me to the E.R.. This hospital asked about my insurance and I remember the look. He was disgusted and started an I.V.. When my face got hot, I asked what he had given me. “Dilaudid”… I blacked out and remember being back at home, high as a kite, throwing up into a garbage can while on the toilet, then blacked out again and the trip through an E.R. in a hospital which was in a neighboring town is a faint and vague memory. According to my wife, she took me there and was able to get me into the car, to a town an hour and a half away, and refused to allow them to discharge me, threatening to call 911 to get an ambulance to take me to a professional facility that would assess me. Because of the Dilaudid and no insurance, they accused her of enabling me in a drug addiction. She took out her cellular to dial and a Doctor who was coming in to relieve the other at changeover looked at me and had the staff culture my stool, and do an MRI on my colon. I had C-diff, was perforated, septic, and about to die.

    I mention this because there were three perforations, an extreme narrowing on the left side of my colon from severely untreated ulcerative C-diff, and this had gone on for a year, untreated, except to kill my immune system with chemo drugs, which ultimately allowed my infection to chew up my intestine, without any immune response. I was in the hospital for a week, in-patient, an with a “nothing by mouth” order. An I.V. antibiotic, oral antibiotic, and steroids to help with my intestine.

    I was on broth for a few months, baby food, and worked up to chicken soup after a few months. Remicade worked slowly for me, but after 6 months, it put me completely in remission. For a while, I was feeling hopeless, thinking it would not work. Now I can carry my son outside, in the front yard and hold a job. Remicade showed me what remission was after 10 years of misery, that because it was lesser than without drugs, was satisfying. While in the hospital, they gave me a 50/50 chance of living.

    Remicade is wonderful but works at different speeds for different people. A friend of mine took Humera after Remicade became ineffective and that has worked equally well for him, and with no side effects so far. Don’t give up.

  8. I was on Remicade for 6 years, chrons totally in check, side affects of rashes, sinus infections, joint issues, catching every cold! Fungus and uti!s. Was sure I was healed! Went off and after 18 mos. under severe stress, started to flare. Colonoscopy showed active chrons ulcers and spasaming of intestines.
    Short course of prednisone to slow w things down. I want to go back on Remicaid, afraid of Humaira.
    Surveys say it works again 88percent of the time. How do they test for anti bodies?

  9. I started Remicade before it was even approved for UC . After many years of ineffective antibiotics and steroids, I was started on Remicade during a hospitalization. It worked amazingly well. I remained on the regimen for 2 years, with no flare-ups. My GI stopped the Remicade, not knowing that it would be an issue to restart if needed. I remained in remission, with no major flare-ups for over 3 years. I changed insurance companies and GI’s. I began to have flare-ups, which they attempted to control with Humira. Humira did not help at all. I was hospitalized after losing consciousness after a scope. While in the hospital I was receiving large doses of steroids and antibiotics, with no results. My GI team decided to try Remicade. It began to work within one day. I had no adverse reactions. When I went to the infusion center 2 weeks later to get my next dose, I had a serious allergic reaction. I broke out in hives from head to toe, began shaking uncontrollably, my temperature and blood pressure were fluctuating rapidly. They administered solumedrol, Benadryl, and heated blankets. Antibodies had build up, and weren’t detected when the Remicade was first restarted because I had been on iv steroids at the time. I was able to restart the Remicade. I now receive Tylenol, Benadryl, and Solumedrol at the beginning of every infusion, and they start the drip very slowly for the first hour. I have not had a major flare up in almost 10 years! Remicade is definitely the right drug for me. The only new thing they’ve introduced is Zofran, because I get very nauseous during and after my infusions. I will continue to take it as long as it is available.

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