06-27-2014, 08:11 PM   #1
SoOoO CoNfuSeD
Join Date: Nov 2012
Location: Quebec

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Remicade lifer?

I'm looking for any success stories of people coming off remicade and maintaining remission. I haven't really found any yet and am seriously hoping it's because those people are doing so well that they don't frequent these forums anymore. I've been on Remicade for a year and a half and have been doing pretty well on it in terms of my intestines and my fissures and fistulas...basically it's definitely had a positive effect of the Crohn's. But i have a few side effects, hair loss, hormonal imbalances that are really annoying and i'm fed up. I'm so fed up and hate the fact that i'll just have to deal with it for the rest of my life. I plan on getting pregnant in the next year or so and am so scared of how my body will feel. i hate that i'll have to deal with remicade side effects on top of pregnancy body changes. it makes me mad. I saw my GI today and was hopeful that perhaps i can consider staying off of Remicade if i could maintain remission for a long enough period. She basically shut those dreams down by reminding me that she strongly would not recommend stopping remicade until the day that enough studies come out to the effect that patients can maintain remission without the treatment. Womp womp womp! She also reminded me that a crohn's flare up is far more dangerous on a baby than remicade. I kind of knew it, but was really hoping to hear otherwise i guess. Remicade has given me a quality of life i didn't have before, but i can't help but wonder at what cost? The long term possible side effects scare the crap out of me (sometimes literally) and it's as though every strange cramp, or weird rash or sore breast has me constantly fearing for the day that Remicade ultimately causes me some other health problem. Part of me keeps trying to tell myself to just accept that that's what my body needs and the other part keeps telling me that it's gonna catch up to me one day. So, please, happy endings anyone?
06-29-2014, 03:30 AM   #2
theOcean's Avatar
Join Date: Jan 2014
Location: Toronto, ON, Canada

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Biologics really aren't as dangerous as you think, and if you've been fine so far you're best to stay on it. Crohn's left untreated can be way more dangerous than any of these medications, and at extremes can even be fatal. Considering you're prone to developing fistulas like I am, I wouldn't question it. I know I'm going to stay on Humira as long as I'm able, and if I ever build up a tolerance or allergy I'll just go straight to another biologic because getting into a flare is something I never want to experience again.

Remicade is made from mouse-protein unlike other biologics like Humira which are humanized, and as a result people are more likely to get bad reactions to Remicade than other medications. If you feel you are getting affected badly by it, just ask your GI about going on another biologic instead. Going off medication entirely is just asking for a flare. There's still no cure for us, after all. We just have to try our best to stay healthy.
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
09-27-2014, 06:49 AM   #3
Senior Member
Join Date: Sep 2014
Location: Northampton, Massachusetts

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I'd be curious to hear about people's stories with this too. It seems like Remicade can be great for knocking out inflammation quickly, but I do wonder about switching to something milder for maintenance once in remission. Particularly for young people, it would seem to make sense to try to minimize the cumulative lifetime risk of some of the ickier side effects.

One situation where that wouldn't seem to work would be with fistulizing Crohn's, which Remi seems to be particularly good for and would seem to be worth staying on long-term.
Intermittent SBOs starting in 2005
Diagnosed 2013
Started Remicade October 2014
10-03-2014, 10:56 AM   #4
Join Date: Oct 2014
Location: Monterey, California
First off, let me say that Remicade has been extremely effective in controlling my Crohn's and has put me in what my GI has called deep remission. I have been using Remicade for over ten years and none of the nasty (but rare) side effects have hit me. The really nasty side effects can occur with all the biologics (TNF Blockers). If you would like to move away from Remicade I would suggest you research (with your GI's help) some of the new medications such as Entyvio which was approved just this year. My limited understanding is that Entyvio is more finely tuned and might have less chance of side effects.
11-16-2014, 04:39 PM   #5
Join Date: Nov 2014
Location: Missouri

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Don't go off the meds.

I had my all time worst flare when I was 11, was finally diagnosed, but still took a good 6-7 years of going through all of the drugs trying to find the right fit for me. I finally went into remission for about 2 years, hardly any symptoms at all. Then I got a little overconfident and decided to go off my Imuran. That'll only last so long - after about 6 months of no meds and thinking I was fine, I ended up in another bad flare, having trouble keeping up in school, and started back on Remicade for the long-haul.

I'd say don't try and fix something that isn't broken. Change to another drug if necessary, but don't try to go off them altogether. I'm afraid that just doesn't work for most of us.
Dx: Crohn's Disease, SpA, May 2004 (age 11); POTS, 2012 (Age 19)
Currently taking: Remicade (Crohn's); MTX (SpA); Florinef, Midodrine, Klonopin (POTS); Iron (Anemia)
Past Meds: Prednisone, 5-ASA, 6-MP, Imuran, Flagyl, Bentyl, Celebrex...you name it!
Other issues: POTS, SpA, Anemia

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