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Discontinuing Remicade (Good Or Bad Idea?)

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Ulcerative Colitis
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Posted 6/25/2017 4:08 AM (GMT 0)
So, i was diagnosed with Ulcerative Colitis in Septemeber of 2015. Apparently is was CHRONIC at the time it was diagnosed. They put me on Lialda (4 a day) & Azathioprine, along with an 8 week infusion of remicade. I started the remicade treatment in October. As time passed, I decided to take myself off of the Lialda & Azathioprine, and surprisingly I did just fine without. I wouldn't consider myself a conspiracy theorist, but some types of medication just don't add up to me. I also have this belief that UC is cureable. They use the word "manageable" for business purposes in my opinion. Anyways, I was wondering if there is anyone out there in the UC world, who has been on remicade at some point in time, and discontinued. & if so what was the outcome & for how long have you gone without. I understand why doctors encourage people NOT to discontinue (antibodies ect.). Good or bad idea?
Posted 6/25/2017 11:07 AM (GMT 0)
I'd say discontinuing remicade is an extremely bad idea. Antibodies often form upon discontinuation and once you flare badly, you won't have remicade as an effective option anymore.

We can all go into a remission for years and during that time we need less maintenance medications to sustain remission than we initially needed to achieve a remission. Stopping all medications is foolish, you will flare.

You're in denial that you have a life-long, chronic illness and that path is one that you'll regret. You're new at this, many of us have been at this whole UC gig for many years or even decades. UC remissions might temporarily feel like a cure, however, flares always happen in time. There's absolutely no cures with this. Just temporary vacations from UC known as remission.

Remissions are wonderful, don't be responsible for ruining yours and directly causing a flare.
Posted 6/25/2017 1:53 PM (GMT 0)
Once I developed antibodies to Remicade then I became allergic to all anti-TNF meds. I had problems with Humira, Simponi and Cimzia. I ended up having surgery after that.

I think that you are taking a big risk without much upside, you're not having any issues with Remicade other then needing an infusion every x-weeks. I get the fact that you don't like taking medication but it's much worse to flare.
Posted 6/25/2017 6:44 PM (GMT 0)
I'm currently on Remicade, but will not be receiving any more infusions. However, this is because my gastroenterologist stated that my colonoscopy from a couple of weeks ago revealed that my colon has not healed any since starting the Remicade (~ 9 months ago).

I've heard some people come off Remicade, though it seems like you haven't been on it too long. Even if UC is curable, I think, since your UC responded to the Remicade, your UC will also respond to coming off of the Remicade. That is, it will likely flare up again.

Obviously, everyone has to make their own choices. If you're set on discontinuing Remicade, then why not take Lialda? It is incredibly safe. I don't see the rationale for discontinuing that if you responded to it. Just my opinion. I'd be incredibly happy if my UC actually responded to meds.
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