Stopping Remicade

Your GI must have more reasons then just - well you are doing great so let's just stop what is working. Are you experiencing side effects from the Remicade? I assume that he is worried about the long term effects of Remicade? If he has not given you a substantial reason backed by data then I would continue with what you are doing.

You are kind of like the unicorn. I don't know a lot of people that have got 10 years out of Remicade. (or maybe they just don't stay on UC boards.)

Gee, if it works and you can tolerate it, i wouldn't stop.

When I had to stop remicade due to adverse effects, my doctor said he anticipated I'd flare within six months. I was lucky & made it for a year til next flare, but it came on fast and severely. And I'm still recovering from it after six months of a lot if misery and working daily to get it under control switching to another biologic...

Hoping your doctor will defer to what you think is right for your body.

You said you had zero antibodies when tested last month, congrats. Was that test done just prior to your next infusion (like within 48 hours of it)? If so what was your remicade concentration at that point? If your remi concentration is really high, just before the next dose, then it's not unreasonable to push it back to 10 weeks. I had a nurse sugest 10 weeks for me, so it's not an unreasonable request (unless you're remi levels were low/borderline at 8 weeks).

Maybe you are in such a strong remmison because of the remicade and if you stop and flare will the remicade be enough to fight a flare? i would be terrified to stop if it's working.

Hi Judy,

I had a very very bad flare in 2013. I was close to surgery and the oral steroids were not working. My GI started me on Imuran but the fear was that it would not kick in quick enough to save my colon. So he put me on Remicade also. The combination of Remicade and Imuran worked a treat and I had remission pretty much immediately. He kept me on Remicade for 5 infusions - so about 6 months of Remi altogether. By then he figured the Imuran would have kicked in. He stopped Remicade after 6 months - I was very nervous about this but my GI's view, and this may differ a lot from other GIs in USA, is that Remi + Imuran was too much immunospression and it was worth the risk to try and see would Imuran work on its own now that I was weaned on.

It did!!! I am symptomless in 2.5 years. Bloods always come back perfect. He's told me he will use Remi again if I ever get into a flare. He also has suggested that he has seen cases where IBD burns itself out though he also recognises this is not the norm.

My (Irish) GI's view is that he will always try the least amount of medication possible to maintain remission and if this means experimenting a little then this risk is worth it. He does not like too much immunospression if he believes a lesser amount will maintain remission.

Again this view of my GI may be quite different than others. I'm loving symptom free existence so very happy with his decision.

There is some good European data (govt pays for meds so creates policies to help pay) about stopping remicade once in deep remission.
Is it worth the significant risk of flaring in the nect 6-12 months? Dunno
Take a look at this even tho it's for CD

http://www.gastrojournal.org/article/S0016-5085(11)01293-5/abstract

My GI gives a presentation related to this topic but the data is for crohn's patients. If you look under YouTube, his name is Miguel Reguiero and is based at the University of Pittsburgh. Essentially, you need to pick the right patient to stop meds on. I've been on remicade since 2009 and would lose my mind if my doc wanted to stop remicade. I'm not on an immunomodulator with it and I briefly stopped it summer of 2014 to try humira (only because of IV access issues). I restarted remicade fall 2014.

I have no experience with this but I'd try the 10 weeks infusions and if that goes well, try 11 weeks. I don't think completely stopping it is a good idea because it is your maintenance medication.

This seems to be more common outside of the U.S. I had a gi doc a few years back who was from Brazil. She said it is the norm to use biologics to get the disease under control and then stop them and have the patient on a lower tier medication. That was her plan for me but remicade never worked long enough.

I don't think I would come off of it if it was keeping me in remission especially if I wasn't having any side effects from it. Biologic's have not been around for many decades so they simply don't know what long term affects may be associated but at the same time, there's risks with everything in life and as the saying goes...."if it ain't broke, don't fix it"

My GI wouldn't even let me try going back down to biweekly shots with my Humira because he's so scared that it might mess me up in some way and he's too scared to take the risk....the only downside for me is I really hate doing my shots weekly and it doesn't help my IBS, only my crohn's colitis which I'm thankful for but at the same time, I still "go" more in a day than I should be (thanks to the IBS) so Judy I think you need to really express your feelings to your GI or find another GI that sees your point of view.

Bookworm, your current GI is thinking along the lines of mine. Your old GI shares my thoughts. My GI always mentions lymphoma, which we know is a very rare side effect. I sort of think he's more worried about protecting himself from lawsuits in case I would develop a serious side effect. I knew the risks going in, and felt the improvement in quality of life were worth it. That's why I've been pushing back so hard on any changes. I'm also on Balsalazide, more to help protect against colon cancer than anything else. I've been on other mesalamines, Azathioprine, and steroids in the past. None of them helped me at all and each did cause side effects. I'm totally not interested in revisiting any of those, or in drifting around experimenting with what might help. I know what helps. For now, we agreed to discuss a change to the ten week schedule at my next visit in six months.

I've had UC for 14 years, so I'm quite accustomed to knowing more about it than my doctors. I educate them, and expect them to approach me as a colleague in planning my treatment. I'm just about to get this current doctor moved to my method. He's from India, so not so used to having his patients tell him what they want from him. He'll get there, or he'll get fired.

My mom has been on Remicade for 10 years to treat her RA and her doctor has no intentions of taking her off of it. I truly believe if she stopped it all her RA symptoms would come rushing back. I don't think I would want to chance it.

I have been in turmoil about whether to take my daughter off it. She has been on it since 2009, and I would say has been in a pretty solid remission for most of those 11 years. She is autistic (severe) and I am her conservator and medical decision maker. Her doctor (first her pediatric GI) said she should stay on it forever. Now she has an adult doctor and he seems uneasy about taking her off it, but he dropped her Imuran which she was taking also. I just worry that she may get a serious infection one day. She needs so much care from others. I feel like she has healed and would be a good candidate for a less powerful medicine. I've been reading the studies (mostly European) and will bring them to her doctor. I'd like to see an exit plan, with a plan of what to do if she does flare again. (She hasn't for over 7 years, and she's put on weight and seems really healthy and pain free) But if he insists she keep going on it, we may go AMA and discontinue it.