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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

 




10 Responses to Remicade and Ulcerative Colitis Question

  1. Adam
    Adam August 31, 2011 at 9:00 am #

    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.

    • Adam
      Adam August 31, 2011 at 6:22 pm #

      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

    • Debbie July 22, 2013 at 9:01 am #

      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. Paul Willoughby August 31, 2011 at 4:28 pm #

    I am on remicade now but have not stopped and then re-started so I can’t answer that one. I hope someone can because I sure am curious.

    all the best,
    Paul

  3. dave evans August 31, 2011 at 4:43 pm #

    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

  4. Michelle August 31, 2011 at 8:00 pm #

    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,
    Michelle

  5. JohnK August 31, 2011 at 8:06 pm #

    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.

    John

  6. Milka September 1, 2011 at 6:18 pm #

    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!

  7. Jimbo September 3, 2011 at 2:32 pm #

    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.

  8. Chuck January 7, 2016 at 3:16 pm #

    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.

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