Remicade and Questions About My Treatment So Far

typical remicade response

Meet Matt:

Hi, my name is Matt I am from Christchurch New Zealand. I have been diagnosed with Ulcerative Colitis (pancolitis) since May 2009 but had symptoms before that for about a year or so on and off. Just started remicade.

Some more about me:

Finished University have a BA in political science, history and a degree in economics (though wishing I had studied medicine about now!) Enjoy all kinds of sports, movies, gym, books etc.

Current Colitis Symptoms:

Been in a constant flare basically since 2009. Been healthy for maybe four months in that time but that was in the first half of 2010. Have tried pentasa (which I still take), azathioprine, methotrexate and now on azathioprine again and starting remicade (had my first infusion on the 17th) the azathioprine is thought to help keep it in remission once if it gets there.

Remicade and My Colitis Treatment So Far:

First of all what is the typical process for improvement on remicade?

I have seen some improvement in symptoms after the first infusion but it bounces around a bit. One minute I seem like I am getting better the next time I visit the toilet and I seem like I am going backwards. Urgency and frequency is down from before the infusions and most are getting more formed but the odd one is a mess and all is still above normal (normal ranging from once every three days to three times in one day) at about 4-5 times a day. It has been less than a week but after 3 and a half years of being sick I am over being told to have patience! So is this typical and should I expect the 2 and 3rd infusions to keep building on it or do you see the most improvement in your first infusion typically?

On a separate note just want to compare treatment that I have had. I have only been on prednisone only once when I was initially diagnosed in 2009. It put me into remission by the end of 2009/start of 2010 and weaned off. I wasn’t given it when I started Azathioprine and my specialist said that Azathioprine should be able to put me into remission on its own but all the reading I have done indicates azathioprine works best in keeping people in remission rather than inducing it itself and that people are typically given prednisone at the same time then tapered off. The Azathioprine eliminated all the blood, diarrhea and urgency for me but the frequency was still about 4-6bms. I am wondering if I gave that a fair shake or if I was ill advised. And what others were told by there doctors.

I am a bit weary of doctors as I went to one in 2008 I think and he told me the bleeding was hemorrhoids. It wasn’t very severe then and a year later my bowel went ballistic so I never saw that doctor again!

Would love to hear anyone else thoughts!

written by Matt

submitted in the colitis venting area

Remicade

11 Responses to Remicade and Questions About My Treatment So Far

  1. Adam December 27, 2012 at 9:40 am #

    Hey Matt,

    Thanks so much for writing what’s going down with you and your current treatments.

    From all I gather, the response/results from the remicade infusions differs quite a bit from person to person. Some people have had fantastic (near complete or complete) remission really quickly, like within a few days. Others, a bit longer, and of course others it simply did/does not work.

    That said, what you should definitely do if you haven’t already is take a peak at the REMICADE SURVEY we conducted here on the site a few months ago. You’ll find answers based off 35 different people’s experience and I think it’s gonna make you feel better about what’s going on with you currenctly so check it out:

    http://www.ihaveuc.com/remicade-infliximab-reviews-and-survey-for-ulcerative-colitis/

    I myself don’t have any experience with the azathioprine med, but I’d be interested to know what others think regarding your questions on that.

    I’m super sorry you had a burn out with the doc who was thinking it was all hemorrhoids. Unfortunately the big bad UC is often hard to diagnose unless a colonoscopy is performed, and for far too many people, what you went through pre-diagnosis seems to be happening more than it should. But you’re past that now, you’re going to get better soon, and keep your head up man!
    I’m hoping that in the coming years we’ll have some doctor reviews for some really great GI’s down in Christchurch NZ, but so far only have one for Auckland…is that really 1070 km’s from you? Man NZ be huge.

    I wish you the best buddy, and hoping some others can chime in here on your other questions,

    -Adam

  2. Ronda December 27, 2012 at 9:32 pm #

    I am on my 9th dose of Remicade as of January 9th. I originally started on 600mg every 2 months and then went to 750mg every 6 weeks and then my last dosage if Remicade I went to 1000mg. I noticed a slight difference with the lower dosage but the higher dosage and weaning off if prednisone has made a major difference in frequency and the amount of blood I passed. I was on a 200mg dose of azithroprine but it did nothing at all for me. I would tell my specialist how I was doing and she made the adjustments accordingly. She has been great and works at the IBD clinic in the city I live in. I would think if it doesn’t get better after a couple more infusions, see if your Dr will change the dose to find one that will work for you. I still have symptoms but they they are something I can live with. I have tried all the drugs and nothing has really worked. I had pretty much been in a flare for 4 years prior to Remicade. This disease sucks but it hasn’t stopped me from doing what I want to do in life!!! Good Luck!!!

  3. PeterNZ December 28, 2012 at 7:09 am #

    Of most concern to me is the side effects of ongoing Azathioprine. You must be monitored very regularly via blood tests – if you aren’t being monitored I’d be back to the doctor ASAP for a blood test form. I experienced scary stuff taking that stuff and now can never take it again.
    If my only issue was going to the toilet 4-6 times a day I’d be stoked. I believe this frequency would be considered “normal” in a population.

  4. Autumn December 29, 2012 at 2:39 pm #

    I know that it doesn’t work for some people but Remicade (while I was on it) worked very well for me. It took a while for it to help my symptoms a lot(I had actually almost given up on the fact that it would help at all) but it did. It took about a week and a half to three weeks for it to help a ton. Although I was also on prednisone at the time. The reason they don’t want to put you on three meds is because it’s one of the biggest risks you can take. Prednisone helps a lot to put it at bay but weirdly enough they believe that remicade is a stronger medication. It helps a LOT of people. How often are you getting the remicade??

  5. Matt December 29, 2012 at 7:12 pm #

    Hi everyone,
    Thanks for the feedback so far great to hear from other people in similar situations and to hear from those that are doing well. Its just amazing to me how widespread this actually is and that I had never even heard of it before I got sick myself. I go in for my second infusion tomorrow, I am actually looking forward to it as it will be great to see one way or the other. My doctor said that if it works (a big if) that I will be on the standard dose every two months Autumn. Also I wasn’t saying should I be put on prednisone now, I was asking when people are put on azathioprine for UC as their main drug to combat the disease do they only take that drug by itself (as I did) or do they usually take a steriod with it, at least initally. It was supposed to be a seperate question away from the remicade drug just wanted to compare with how others were treated sorry if I wasn’t clear in my post. Also Adam, NZ has been called a lot of things but never has it been called huge! Its only four and a half million of us down here but I will take that compliment on behalf of NZ! I will give a review on my current doctor sometime soon and as he pushed the medical board to allow me to have the treatment because it is not currently funded by our public health system it will likely be a mostly glowing one.

    • Adam December 29, 2012 at 10:43 pm #

      What up Matt,

      hey bud, best of luck to you with the infusion tomorrow, (I still think NZ is huge) Come on man, some of those mountains look massive in the photos…must be a huge country right..:)

    • Thea January 2, 2013 at 3:26 pm #

      Hi all,

      This is my first time posting. I was diagnosed with UC this Sept. though I now realized I have probably battled with this for over a year. I am 53 and since Sept have had 2 flares. The current flare is not responding to the Prednisone and I am contimplating whether or not to go on Remicaid.

      For those of you who did use Remicaid did you need to miss work? If so, for how long? I have already missed 3weeks since this started in Sept.

      Thanks,
      Thea

      • Jenn January 4, 2013 at 1:57 pm #

        Thea,
        I have been in and out (mostly in) of flare ups for 4 years. I’ve had UC for 12 years. Kept it in control with asacol/lialda for the first 8 years. A pneumonia bout with heavy antibiotic usage and menopause caused the flare up. Was treated for c-diff also during the four years, rowasa and the last huge flare with prednisone. Treatment from start to finish on the pred was 6 months from 40 mg. to 0. Couldn’t stay well after coming off the prednisone (even though still on rowasa and lialda) and after two months of being off it experienced another huge flare. This time my doctor kept me home 3 months, had to use rowasa 2x/day then down to 1. He put me back on a dose of 20mg of prednisone til i started the remicade (250 mg). The first treatment was in July, the second 2 weeks later, the 3rd 4 weeks later then 8 weeks later. He told me it is prescribed by weight. I have had my 5th infusion on Dec. 14. It took about 12 days to start feeling better (but the prednisone was upped just before the injection to 15 from 10mg). As of today, feeling significantly better and am back down to 11.25 mg prednisone. Hope this will last longer as the dosage was increased to 300 mg due to a little weight gain. So far I have found the remicade makes me very tired for a day or two and i usually rest alot and drink lots of water to help. It takes a while for me to feel better on a consistent basis and then 1-2 weeks before the next treatment I start to feel more symptomatic. I am hoping to get off the prednisone sometime after my next infusion. I hope to be down to 7.5 mg, in a month;s time. Be sure to get a bone density test if you are on prednisone. I now have osteoporosis to deal with too. good luck and i hope you have success with the remicade.
        Jenn

      • Angela February 8, 2013 at 12:35 pm #

        Hi Thea,

        Remicade infusions usually only take around 2 hours to administer depending on your clinic. I would recommend taking the day off as you’re usually tired afterwards. But that’s only every 4-8 weeks depending on the frequency. I’ve been on remicade for 8 years and have never had a problem with missing work or school for it. Most places will understand. Also, if you live in the U.S. UC patients are protected under the ADA Act so your work provider has to allow you to see the doctor for both treatments and visits.

        Hope that helps!

        Angela

  6. KimberlyHI
    Kimberly December 30, 2012 at 12:26 am #

    Hi Matt! When I had a bad flare this past September, I was put on prednizone, then azathioprine and Remicade, for a little while I was on all three, normally my doctor would treat the flare with the prenizone to get the inflammation down, and then use the others to help with the flare and reach remmision. I don’t know if that is the best option but my doctor then was trying to treat the flare aggresively. I also just switched to a differrent doctor and once I went to him he immediately wanted me off the prednizone. I think a lot of doctors won’t give prednizone unless they have to because of the side effects and complications it can cause. But other doctors do because they know a lot of times it will gove their patients relief pretty quickly.
    So now I am on only azathioprine and remicade, my 4th remicade was Dec 19th. My flare was much better within 2 weeks of taking remicade but I had started the azathioprine the same day so I don’t know which one worked so fast or if both together worked better. But I have heard it can take as long as 3 months to see results :(
    I am pretty much in remmision now but I do have side effects which my doc says is from the azathioprine so we are very slowly going to taper me off that. They want to keep me on a while longer because they say taking it with remicade helps keep the body from producing antibodies that could cause the remicade to not work any more.
    I really hope you feel better soon! I know I had to wait weeks to be put on remicade and I was just miserable during that wait, I could not wait to get my first infusion with the hope to find some relief! I feel much better now. I think I get better after each infusion so far, also, I am going every 8 weeks now but I guess some people have to go more often, like every 6 weeks, once you start getting closer to that 8 weeks you start to notice you have to go more and stuff. My remicade nurse tells me if I start feeling bad before the 8 weeks to come sooner.

  7. Tharisa January 13, 2013 at 8:28 am #

    Im a 37 year old female. I was diagnosed 15 years ago and have stayed mildly under control with a very healthy lifestyle, Lialda daily and Prednisone during flare ups. I had my annual colonoscopy on Friday (1/11/13). My Dr. is recommending I begin Remicade in the next two weeks due to the severity of my disease. I have fought him for years on this, but quite frankly Im sick of being sick all the time. I think I’m going to give it a try and see what happens. I’m terrified to put this in my body, but I hope it will bring me some peace and a more normal life.

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No matter what, colitis flares don't last forever, don't forget it:)