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

 





9 Responses to “Remicade and Ulcerative Colitis Question”

  1. AdamAugust 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.

    • AdamAugust 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

    • DebbieJuly 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 WilloughbyAugust 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 evansAugust 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. MichelleAugust 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. JohnKAugust 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. MilkaSeptember 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. JimboSeptember 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.

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