Many inflammatory bowel disease (IBD) patients receive medication. Which drugs, in what dosage and their combination, is individualized.
Almost everyone would probably prefer to not take any medications at all. However, IBD is complicated to treat, and there is potential for serious complications with untreated Crohn’s disease or ulcerative colitis.
Still, there are some patients who want to discontinue their IBD medications. And this might be a valid goal — if they can get into deep remission.
Remission is a Big ‘If’
Deep remission in IBD is elusive. Any kind of remission isn’t assured because right now we don’t know which drug will work for which patient. We have lots of choices, which is wonderful, but we are lagging on the effectiveness.
There has been some study done, however, on stopping medications for certain patients who get into deep remission.
One meta-analysis looked at randomized controlled trials and observational studies on dose de-escalation of biologic therapy in adults. Patients taking a biologic either lowered the dosage or took it less frequently. Unfortunately, the relapse rate within a year in 6 of the studies was between 7% to 50%. The authors concluded this means that de-escalation is associated with high rates of relapse, but they also point out that the evidence quality was low.(Little)
Another study of 25 patients looked at de-escalating infliximab (Remicade) or adalimumab (Humira) in patients in deep remission. In this study, 16 (64%) were able to stay on lower doses after 12 months. For those who had to go back on higher doses or add medications, that decision was usually made at about 6 months after de-escalation. The authors say that for some patients, de-escalation might be possible if they are monitored closely.(Little RD)
A third study looked at 207 patients in 64 hospitals across seven countries in Europe and Australia. There were several cohorts, which included continuing therapy or withdrawing infliximab (Remicade) or immunosuppressants. Of those patients, 35% who withdrew infliximab relapsed and 9% who withdrew immunosuppressants relapsed. In the group that continued therapy, 12% relapsed. The authors concluded that withdrawing infliximab should be done only with careful consideration. But that withdrawing immunosuppressants could be a “preferable strategy” in de-escalation.(Louis)
There are more studies, but the science is far from settled. It’s still not clear which patients can reduce or stop medication, and how long that could work.
Looking for guidelines and recommendations on de-escalating therapy? Check out this article from some key opinion leaders in the IBD space: De-escalation of IBD Therapy: When, Who, and How? Here’s a hint: Check out Table 1 at the end. But take care, because the questions are a little aggressive.
What Do Patients Think?
This made me wonder: what do patients know about de-escalating therapy? That’s why I decided to ask people who follow About IBD on Twitter and Instagram if they’d ever considered stopping their medications.
“Is discontinuing IBD medication an important goal for you?”
- Haven’t considered it
- I don’t take medication
Here’s what people answered in my poll:
- Yes: 29%
- No: 51%
- Haven’t considered it: 11%
- I don’t take medication: 9%
- Yes: 26%
- No: 44%
- Haven’t considered it: 22%
- I don’t take medication: 7%
Twitter responses gave some context:
“I find that people that have a dream of discontinuing meds are not experienced enough in the IBD world. All the power if they can and stay safe. I only have hope the meds work well for the people I know.” – Patient
“Yes. It is our aim for our young son. ‘No-med’ might not be a feasible goal but it’s the north star and the principle that’s guiding all aspects of our lives. We are doing our best to not give power to ‘Crohn’s’ and we need a high aim to keep the motivation going.” – Parent
“It’s a goal, and like any other goal, it’s one that you have to take concrete steps to achieve, and pivot when necessary.” – Patient
“Didn’t think it was really an option. I’ve accepted I’ll be taking medication for life.” – Patient
“I flare while on medication. If it’s working for the most part I don’t want to go off of it unless my GI and I decide it is time to switch biologics.” – Patient
“Not at all. I’ve found medication that works well for me, and I’m grateful for it.” – Patient
“I tried several times when I was younger to stop my meds and it always ended with me back in the hospital. Now, I’ve had a good chunk of my insides removed & the question came up again. I still said that I’ll stay on them for the time being because it’s always come back in the past.” – Patient
“Many patients, if not all of them, ask in the office about when they can stop medication. It is important to discuss what are the goals we [intend] to reach, especially on the treat to target era, and what is the odds of flare if we stop meds depending in the grade of remission.” – Gastroenterologist
Any poll has limitations. Given the high number of people who weren’t aware that discontinuing medications can be a goal, this poll might not provide a lot of insight beyond the need for education.
It’s important to remember that everyone’s journey is different. The online IBD community might skew towards people who are living with more severe disease. Those who are experiencing mild disease or who are in remission might not be discussing their IBD on social media. They’re out living their lives.
I’m not saying something that most people in the IBD community don’t already know: there’s a need for more education about medication. This includes how medications work, what they can and can’t do, and their role in long-term care.
As more drugs are being developed for IBD, there’s a need for better patient education. There are myths and misconceptions around medication that includes how they work, what the potential side effects are, their use during pregnancy and breastfeeding, and their long-term effects.
As patients, we have a responsibility to take a role in our own care, and to learn on our own time. However, we also need partners in our care that are willing to meet us where we are and help us understand all of our treatment choices, including de-escalation.
- Little DHW, Tabatabavakili S, Shaffer SR, et al. Effectiveness of dose de-escalation of biologic therapy in inflammatory bowel disease: A systematic review. Am J Gastroenterol. 2020;115:1768-1774. doi: 10.14309/ajg.0000000000000783.
- Little RD, Chu IE, Ward MG, Sparrow MP. De-escalation from dose-intensified anti-TNF therapy is successful in the majority of IBD patients at 12 months. Dig Dis Sci. 2022;67:259-262. doi: 10.1007/s10620-021-06937-z.
- Louis E, Resche-Rigon M, Laharie D, et al; GETAID and the SPARE-Biocycle research group. Withdrawal of infliximab or concomitant immunosuppressant therapy in patients with Crohn’s disease on combination therapy (SPARE): a multicentre, open-label, randomised controlled trial. Lancet Gastroenterol Hepatol. 2023:S2468-1253(22)00385-5. doi: 10.1016/S2468-1253(22)00385-5.
- Louis E, Mary JY, Vernier-Massouille G, et al; Groupe D’etudes Thérapeutiques Des Affections Inflammatoires Digestives. Maintenance of remission among patients with Crohn’s disease on antimetabolite therapy after infliximab therapy is stopped. Gastroenterology. 2012;142:63-70.e5. doi:10.1053/j.gastro.2011.09.034.
- Torres J, Boyapati RK, Kennedy NA, et al. Systematic review of effects of withdrawal of immunomodulators or biologic agents from patients with inflammatory bowel disease. Gastroenterology. 2015;149:1716-1730. doi:10.1053/j.gastro.2015.08.055.