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Life After Remicade?

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Ulcerative Colitis
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Posted 1/21/2015 10:25 AM (GMT 0)
I have been on Remicade for nearly 6 years and love it. I've never gone into full remission but it's close enough that I'm happy (early mornings are off limits but by 8:30/9:00 I'm fine). I only need to see my GI once a year and that is only to get another year-long prescription for Remi. Ever since I started taking it, my doc has been trying to get me off it. He worries about the cost, possible side effects, and unknown long-term usage effects. He would rather I take a daily maintenance drug. I personally have no issues with taking Remi for the rest of my life (as long as insurance pays for it).

Anyway, I told my doc that I would look into his suggestion.

I'm not looking for Remicade haters. I'm asking people who have had success with Remi but have stopped it. What sort of daily maintenance do you take? I've tried 5asa, 6mp, and several -zines and -mines before Remicade, all of which worsened my symptoms. I'm worried about quitting Remi. As I understand it, once you quit, your body builds an immunity to it and you can't go back. Anyone out there quit Remi and later gone back to it?
Posted 1/21/2015 12:10 PM (GMT 0)
So, you haven't yet reached a remission, yet your gastroenterologist wants to get rid of the strongest uc medication class there is, biologics? I'd say you'd end up flaring up again should you stop remi. If you've had bad reactions to both 5-ASA's and 6MP then what should you take?

I've seen a few articles saying you can discontinue remicade and resume treatment within a year then the antibody buildup risk is minimal. So it is possible to take a brief hiatus without a lot of risk.

Could you try a different biologic to see if simponi, humira, or most promisingly entvyio? Entvyio uses a different mechanism of action then remicade, so it could offer you remission.
Posted 1/21/2015 12:37 PM (GMT 0)
If it was me, I would not stop Remicade for fear of relapsing. There are some unknowns to long term biologic use but if you have great quality of life and not experiencing any side effects, I'd stick on Remicade for as long as you can.
Posted 1/21/2015 12:55 PM (GMT 0)
I have stopped remi although it was successful and went back on Azathioprine.
Posted 1/21/2015 2:20 PM (GMT 0)
When Remi stopped, it was all downhill. Nothing else achieved real remission. (Side effects of Tacro were awful.)There were no antibody build ups, so she restarted it. Doubled the dose, increased frequency- think 10mgs per kilo at 4 wks- and it did nothing but give a month long rash(now, there probably are antibodies). No other anti tnfs were logical, got too sick to give Entyvio the time it needed, and surgery was scheduled.
Remi has been used even longer in RA. I would stick with it. My 2 cents
Posted 1/21/2015 2:34 PM (GMT 0)
I agree with the others. Sounds to me too that if you stop that it's possible it would throw you into a flare.
Posted 1/21/2015 2:46 PM (GMT 0)
I am surprised your doctor would suggest stopping. Most think if something works, stick with it. I wouldn't want to stop and risk a flare up. What options would you have then?
Posted 1/21/2015 3:31 PM (GMT 0)
Before Remi was approved for UC, I had the three-dose loading protocol. Then my insurance decided they weren't going to pay since it was still classified as "experimental" for UC. I was in almost full remission. Over the next year my symptoms gradually got worse, and in the meantime it had been approved so I re-started Remi and was lucky enough to have it work again. I've been on it for 9 years now, and don't plan to go off unless I have a bad reaction or it stops working.
Posted 1/21/2015 4:19 PM (GMT 0)
What mtnce med does he want you to go on? You already said you tried several and they made you worse. This idea is ripe for disaster. Stopping would be very foolish.
Posted 1/21/2015 7:15 PM (GMT 0)
I think it would be a huge mistake to stop remicade. I'm on it and last summer I started having issues with IV access and I'm not a good candidate for a port so my former GI doc suggested that I switch to humira since it's SQ. Within 2 weeks of starting humira, I developed neuropathy in my feet to the point that I had to take a medical leave. My GI didn't think it was related to the humira and I continued it for 3 months while seeing every possible specialist. I finally called him and asked to go back on remicade. I've now had 3 infusions and the feet are almost back to normal. My former GI doc mentioned seeing how I would do without any biologic which wasn't anything I would ever consider. I've already played that game and lost in the early years of dx. Now I've got a new specialist and I will never agree to stopping any med that is providing adequate remission without significant side effects.
Posted 1/22/2015 2:55 AM (GMT 0)
It's funny that you're posting this--I'm kind of in the same boat...my current GI says that if you've been in remission for a few years, she'd rather not have you taking medication if you don't need it (especially since I've had weird things happen, like developing multiple food allergies).

How do you know that you haven't gone into full remission? Have you had colonoscopies that showed remaining inflammation? I wouldn't go off of Remicade unless my scope biopsies come back clean...and even then I'm hesitant. I have been able to accomplish so much (college, grad school, new jobs) and go through many tough things (parents' illnesses, other health problems) while on Remicade for almost 7 years, and I'm afraid of relapsing. Of course, now that I'm not leaning toward NOT going off of Remicade, I've had some numbness and tingling in my hands and feet since my infusion last week. confused
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