Can I stop remicade infusions if I have been in remission for several years?

I'm pretty sure as soon as you stopped remicade your body would start flaring again shortly after. Remicade is the reason you're not flaring and are symptom free. Think of it like a person with schizophrenia. They get on proper medication and no one even knows they have it. They think "hey I'm doing really well I don't need meds." So they stop them and they spiral down and everything comes back. The meds were keeping them functional, not their body. It's the same here. You will have UC forever. Your body hasn't fixed itself, remicade did that. Also if you were to go off remicade and the symptoms came back, going back on remicade would give you a greater chance of your body rejecting it and creating antibodies. My advice, stay on it.

You know the old saying: If it ain't broke don't fix it. If you're doing well, keep at it and don't stop.

I would encourage you to watch video presentation by my doc Miguel Regueiro posted on YouTube. The title is "Biologic Therapy Should Never Be Stopped, or Should It." It's about a 13 minute power point he gave at a conference. His side of the argument is when is it ok to stop treatment and the data supporting it. The studies he presents are for crohn's but I still think it's a good video to watch. There is an 88% success rate in restarting remicade for those that relapse. Last summer, I was briefly off of remicade and on humira and successfully went back to remicade after 4 months.

certainly you can stop - but that's where the certainty ends - not one person in this entire universe can tell you what will happen next -

as you've seen, most folks here will tell you to never stop -i think there are lots of questions that need to answered by you before you can decide -

me myself personally, if i ever need meds again, 5asa's or nothing - i'll take a bag any day over sitting, for what, 3 hrs every 6 weeks to get remmi shot into my vein ? nope, not for me -

maybe something new and miraculous will come along in the future - one never knows ;-)


remdarpolt ?????? care to share ?

It is worth increasing the interval to see, and watch carefully.

The whole concept of taking pred (which does not fix anything) is to let some other med like 5-asa or 6mp get a foothold. if it is true there, it is true here. You might be able to maintain remission with 5-asa. But I would try longer intervals first. Then if you try to wean off all the way, I would get a CRP level and monitor CRP and symptoms carefully. IF you see any return of inflammation or symptoms, then resume Remicade.

There is some risk you will taper and flare, and that restarting might not work as well. Should be OK as long as you don;t have antibodies. But there is some risk. So balance the desire to be on a different maintenance program with the "if it ain't broke" line of thought.

Life is a series of choices. Good luck.

I stopped Remicade last fall; not because I just didn't want to, but because I've had very severe pain since six months after starting it and wanted to find out if stopping would alleviate that (it hasn't so far).

Within a few days past when my canceled infusion had been scheduled I began to have pains. I quickly changed my diet (eliminated raw veggies, most any dairy but cheeses). Still, I had pains. They were dull burning pains; the sharp pains subsided when I stopped the veggies. Anyways, my body was telling me I was one trigger away from flaring.

Then, I went gluten-free. Most of the dull pains stopped after a week.

I went on prednisone to try to help with the pain 2.5 months after stopping Remi, and as I've tapered off I've began to feel closer to flaring again, as my body began to depend on it for inflammation suppression.

So anyways, I'm 4.5 months with Remi completely out of my system, and my body has told me it wanted to flare twice already. But, as long as I keep things calm and healthy it seems to be okay. I don't know if this is due to the gluten-free diet, one of the meds I'm taking for pain (Tramadol... it also increases serotonin and I feel like this may help me), or just pure luck.

One other time I delayed Remicade an extra week and began to flare so bad that I was afraid to drive 20 minutes without soiling my pants...

Remicade sucks in some ways, as it is really potent stuff. Not wanting to be on it is understandable. Just don't make the decision lightly, and really consider all the possibilities if you have others depending on you for anything.

Thank you all for your replies. I wanted to get an idea of what others have experienced. I know I am lucky to be doing well on remicade. A friend of mine was telling me her 16 year old son was on remicade for chron's. Her impression was that he was to be on remicade for a year and after he had a colonoscopy to make sure the disease was inactive that he would've taken off. I did not think this was correct, but it got me thinking that maybe since my UC isn't active I could wean off of the remicade. It is a powerful drug and I am worried what the long term side effects will be. I did not even think that my body would build antibodies against the remicade if I went off and it wouldn't be effective anymore. Thank you again for the advice.

That's the thing, remicade was the first biologic medication and it is 75 percent human protein and 25 percent mouse protein. It's that 25 percent that looks like a foreign invader to your immune system, why your immune system can target remicade and create antibodies against remi. Stopping remi for more than a month increases the odds of antibody development. Using immunosuppressive medications concurrently with remicade helps prevent antibody development (medications like Imuran, 6mp, aza).

If your immune system did develop antibodies against remicade, you still have humira and simponi to try; so you are not entirely out of luck. It's a risk, for sure.

“Kaplan-Meier analysis of the proportion of patients with sustained clinical benefit demonstrated that 50% relapsed within 477 days after infliximab discontinuance. In contrast, 35% of patients remained well, and without clinical relapse, up to the end of the nearly 7-year follow-up.”


This study demonstrates that up to 67% of patients with IBD in deep remission at the time of cessation of TNF-alpha blocking therapy remained in clinical remission during the 12-month follow-up. The majority of patients (85%) in clinical remission also remained in endoscopic remission.” Retreatment with anti-TNF therapy after a patient relapsed was effective in 94% of patients.

I wanted to tell my story which may be unique to me as everyone's disease is different. I was diagnosed with UC in 2014 and went into the worst flare, I ended up in hospital for two weeks and wouldn't respond to oral steroids or steroid infusions. I had become severely anaemic and tetracardic , loosing most of my body weight.

Infliximab was not approved on the NHS at this point. The doctor was talking about removing my colon and I was literally crying every day. I read about infliximab and managed to have it privately given it wasn't NHS approved, a week later I was in remission. I continued having 8 weekly infusions, but then I started to flare through the infliximab so this became 6 week. I started to have the side effects, repeated infections, abcessses and sinusitis.

Last year after two operations due to abscesses I came off it despite not having had a very stable history. This was last September. Over Christmas I went through one of the most stressful times of my life with my father dying after being very ill. ( I have always thought my UC is stress related). Despite all this I have not flared, I am off infliximab, feeling good and no longer getting infections. I think a better diet and a different attitude to stress has helped. I no longer worry about the disease. I think if you have other lifestyle changes then it can be a risk worth taking but for me there were many factors such as the side effects I was getting from infliximab which had got too much. I hope this helps someone else.

Personally, I think it is a really, really bad idea to stop the remicade.

Nobody becomes addicted or dependent on biologics like remicade (like you can be to Nicotine or Opiods).

However, the clinical best practice is to say stay on biologics. Why? Risk of antibody formation should you abruptly stop them. That's the reason they say stay on biologics, not any dependency or other crap. Restarting later may not work as well as it did initially due to antibodies. So why risk it? Antibody formation isn't something that is all that well understood. It seems to happen randomly with people even when the best known practices are followed.

Multiple gasteroenteroligists have told me over the years that biologics would be a 1st line treatment of UC if they just weren't so darn expensive. They are safe and effective, and treating strong early on often stops disease progression and unneeded suffering from bad UC flares. Starting with the weakest medications 1st can lead to struggling by the patient, disease progression in extent and severity, and so forth. Hit it hard and early for the best long term prognosis. That's currently the practice for pediatric patients who are at the most risk and will have to deal with UC for the longest stretch of their lives. You want the best possible outcome for them. It'd be broadly applied to everyone if possible. And as costs come down over time then I wouldn't at all be surprised to see it become common for all.