Remicade every 4 weeks?

Hi everyone, I am new to the site, but very excited to have found it! I was diagnosed with UC a year and a half ago and have been struggling since. I am currently receiving Remicade infusions, however, they only seem to hold me over for about 4 weeks. My new doctor wants to start infusing me every 4 weeks, as opposed to 8. This seems drastic to me. I obviously want to prevent the constant flares, however, I'm terrified of the medication! Has anyone else heard of getting infusions every 4 weeks? And at what dose?

7 months ago
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  • mar

    Welcome to the group Cait, and some people do get their Remicade once per month...   do you currently take other maintenance meds, like Asacol or 6Mp?  Some of those drugs enable people to go longer between infusions.



    And there are studies showing that more aggressive treatment now may prevent future surguries....   Good luck, and keep checking back for input!  :)

    7 months ago

  • Cait

    Thanks so much Mar. It makes me feel better to know that other people receive it that often as well.  I have tried several different other medications including Pentasa, Asocal, Colozal, Lialda, Apriso...none of which have seemed to help.



    My other concern is whether or not a higher dose/ higher frequency causes Lupus like symptoms in patients?? I have spoken to some people who this has happened to.... This is also a fear of mine!

    7 months ago

  • mar

    one of the Site Leaders here, Brenda, has a teen daughter that gets Remicade evry 4 weeks or so....   This pretty teen also has UC/ Crohn's, but seems like it sure doesn't slow her down much!   There is also a small group here, in Communities, called Remicade Round-Up....   lots of friends waiting to help any way that they can.  :)

    7 months ago

  • Sara

    hi cait, welcome to the site. i know how you feel abou the remicade and not wanting to take any more.  im currently on every 8 weeks.  and like you , i would worry if they wanted me to take anymore!!  i was on the remicade website and it actually said that people get it anywhere from every  2-8 weeks! this surprised me because i thought it was at the most every 4 weeks.  The whole remicade induced lupus thing scares me too.  sorry i cant be of more help to you in answering your question.    here is the link for the group remicade round-up.  http://www.wearecrohns.org/remicaderu



    you can either post your question there, or under the questions section which you can get to by clicking on it it---top middle of your page in between comunities and health tracker. good luck!

    7 months ago

  • brenda


    Cait - my daughter does have it every 4 weeks - we're currently working up to 5 .. we used to be on 8 weeks, but they messed around with it and we;ve had problems ever since.

    If 8 weeks seems too long, perhaps they'll try 6 weeks? Or increasing the dose while keeping the in-between interval fairly flexible between 8 weeks and something less??

    My girl is on a ridiculously high dose ("higher than ever before studies" were the doc's shocking words!) but, she gets to keep her colon ... for now.

    I'm interested in BUYING time, so we will make deals with the devil in order to accomplish that ... Pop on over to my profile ... take a gander ... Oh, and WELCOME to the site!

    b

    7 months ago

  • Ashley

    Hi: I am surprised that they are starting right off the bat with every 4 weeks, usualy the protcol is 8 weeks then if it isn't holding uping the dose to the amt of what your size is like weight etc. then if that doesn't help then changing it to every 6 weeks,then 5 etc. If they start off at every 4 weeks and if your body builds up immunities to the drug too soon then it would have to be stopped.

    7 months ago

  • Jenny

    I have CD and receive my remicade infusions every 4 weeks. I was having the same problem with "crash and burn" around week 4-5, so they changed to every 4 and it has worked wonders. I also take 150 mg of Imuran every day. I have been doing this since last July and so far so good...

    7 months ago

  • Phillip

    I have mine every 8 weeks, but it seems to wear off around 5 weeks or so, so i probably will be talking with my GI to have it more regularly.  

    7 months ago

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