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Stop Remicade after 2 infusions?

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Posted 7/23/2011 12:37 AM (GMT 0)
Hello fellow UCers,

Has anyone stopped Remicade during the first 3 loading doses and able to maintain remission?

I just had my second infusion last week and have gotten exponentially better (now only experiencing gas pains and ~4 BMs with no blood or mucus) within the past month when I was in full out flare (going 30+ times per day, continuous blood, almost no mucous lining left in my colon).

Although I realize that's not guarantee that I'll reach remission any time soon, I'm wondering *if* I'm symptom-free and my next scope is good, if it would make sense to discontinue Remicade (while continuig with oral and rectal Mesalamine meds) or stay on it for maintenance? I'm nervous about my body eventually rejecting the meds and the long-term side effects of Remicade.
Posted 7/23/2011 1:14 AM (GMT 0)
Hey Lisa,

I don't think they typically do that because once you stop using it, it most likely will not be effective in the future for treating a flare up. Your body will build up antibodies and you will have to look for another solution. If they keep you on it, I guess it is less likely you will build up antibodies but I see people build up antibodies frequently regardless. I also see people on here who actually start to flare up after a certain period of time without Remicade. Some can go 8 weeks, others 6 weeks and some have to push it up to 4 weeks. I know in other countries, they don't do Remicade on-going like we do in the US, maybe others with experience will answer. I haven't been on Remicade but I was considering it and my GI said it would be on-going treatment.

Did your GI say that s/he thought the mesalamine medications weren't effective for you anymore? That seems to have happened to me. Asacol stopped working and none of those medications would keep me in remission.

You could ask your GI about spreading the infusions out further?

Posted 7/23/2011 1:36 AM (GMT 0)
I'd suggest trying to get off the Prednisone before you even consider stopping any other medications. Its long-term side effects are serious and almost certain to appear after a time, whereas Remicade's serious side effects have appeared rarely. After that, you have to decide if you're willing to risk going back to where you were before Remi, knowing that it may not get you into remission again if you stop and re-start. Only you can weigh that decision.

I had the three-dose load, then had to stop because it was before Remicade was approved and my insurance wouldn't pay for any more infusions. I started getting worse within three months, but it took me a year to get back to as sick as I'd been before the Remi. I was very lucky that it worked for me the second time around.

Good luck with whatever you decide.
Posted 7/23/2011 1:44 AM (GMT 0)
It will come back. You've just poured a little water over a continuous flame. If you are not comfortable with taking it just stop it because of that.

Post Edited (Dr-A) : 7/22/2011 7:47:54 PM (GMT-6)

Posted 7/23/2011 2:34 AM (GMT 0)
Good point about the anti-body build up. I'm tapering off the Pred - was originally at 60 mg. when I was in the hospital several weeks ago and it didn't contain the inflammation and I experienced all of the horrible side effects. I'm now down to 20 mg. and should be off of it shortly.

The Mesalamine medications do still work (I think). However, I was in remission for a year and a half before the latest flare and stopped taking the nightly Canasa suppository I was originally prescribed when I was diagnosed. During my time in remission, I moved to SF and hadn't gotten a local GI doc until the flare was too out of control for a nightly suppository to control. Hence the hospitalization and escalation to more intense meds.

@Dr-A - What do you mean by "You've just poured a little water over a continuous flare"?
Posted 7/23/2011 4:50 AM (GMT 0)
Flame. I always think of my UC that way. Trying to turn into a raging inferno, but I am always trying to keep the fire at bay.
Posted 7/23/2011 2:41 PM (GMT 0)
I have been on remicade for two years now and I was told I can not go on and off of it.  Like notsosicklygirl said you have a higher chance of building up antibodies to it or it not working the second time around at all or like it did the first time.  I don't like the side effects either(or the chance of them).  On the other hand I can't have a life like I did before starting the remicade.  I was miserable and could go no where.  I was going 10-15 times a day with lots of urgency and accidents.  Remicade has given me my life back.  I pray everyday that I don't get some side effect from the remicade but we really don't have many choices or options.  Surgery is a option but what if I have problems with that.  Surgery has its own problems/potential side effects also. 

If you can't handle being on a medication that can have very bad side effects and it is going to scare you or stress you out then you shouldn't be on it.  Only you can make that decision.

Posted 7/23/2011 7:17 PM (GMT 0)
My son has been on remicade for two years and it isn't working as good as it was, he is considering the surgery, what are the side effects of the surgery.
Posted 7/23/2011 8:35 PM (GMT 0)
sorry to burst your bubble, but chances are once you taper off the Prednisone, some of your symptoms will come back. I'm glad you feel so much better on Remicade and can understand why you would not want to use it long term. My daughter goes for her 3rd infusion on Monday - I hope she is as lucky as you have been with the results
Posted 7/27/2011 1:06 AM (GMT 0)
Dear colitismom,
I had a colectomy with re anastomosis in Dec. 2007. I had been doing well on mesalamine since the early 1980's. A colonoscopy detected pre cancerous cells. The standard procedure at that point seems to be removing the whole colon. The created a j pouch from my small intestine, and re atteached to the rectum. I had had nightmares about needing a colostomy, but fortunately, I didn't. I did develop a hole in the small intestine, close to the stomach which required more surgery, but was not a result of the colectomy. Likely something that would have "blown out" anyway.

I stopped mesalamine, as it works in the colon, and I was passing whole pills. Since, I have felt quite well on Cipro with occasional flares, which were controlled with diet. This latest flare has been out of control, however, and the next logical step seems to be remicade. We've talked about it for years, and it's time.
I guess I'm writing to say that there is life after surgery. Since the surgery, aside from missing salads, and fresh fruit, I pretty much could eat a regular diet. My quality of life has been very good until recently. I even went back to work part time, took a 1000 mile road trip(with a very underdtanding husband), have taken several vacations. So surgery is not the end of the world.

All the best,

djsmimi
Posted 7/27/2011 1:15 AM (GMT 0)
Dear colitismom,
I had a colectomy with re anastomosis in Dec. 2007. I had been doing well on mesalamine since the early 1980's. A colonoscopy detected pre cancerous cells. The standard procedure at that point seems to be removing the whole colon. The created a j pouch from my small intestine, and re atteached to the rectum. I had had nightmares about needing a colostomy, but fortunately, I didn't. I did develop a hole in the small intestine, close to the stomach which required more surgery, but was not a result of the colectomy. Likely something that would have "blown out" anyway.

I stopped mesalamine, as it works in the colon, and I was passing whole pills. Since, I have felt quite well on Cipro with occasional flares, which were controlled with diet. This latest flare has been out of control, however, and the next logical step seems to be remicade. We've talked about it for years, and it's time.
I guess I'm writing to say that there is life after surgery. Since the surgery, aside from missing salads, and fresh fruit, I pretty much could eat a regular diet. My quality of life has been very good until recently. I even went back to work part time, took a 1000 mile road trip(with a very underdtanding husband), have taken several vacations. So surgery is not the end of the world.

All the best,

djsmimi
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