Coming off: what to expect

Stopping is an ordinary shape

Benedikt has held the coming-off circle since it started, and the first thing he says to almost everybody is that stopping is not an exit from this community and not a failure of anything.

People stop for all sorts of reasons and every one of them is legitimate. Cost, which is the commonest by a distance. A shortage that decided it for them. Side effects that never settled. Planning a pregnancy. Surgery. A change in what is funded. A clinician’s decision. Simply having had enough of injections. Or arriving somewhere that feels liveable and wanting to find out what happens next.

You will meet people online who treat stopping as a moral event — either as heroic self-liberation or as giving up. Both framings are rubbish, and both make it harder to think clearly about a decision that is mostly practical. In our circles, people who have stopped are members in exactly the same standing as everyone else, and a good number of them come back later. Restarting after a break exists precisely because that is so common.

What the withdrawal trials found

Two trials were designed specifically around stopping, and their results are the most important thing on this page.

STEP 4 (Rubino, JAMA, 2021) ran all participants on semaglutide for twenty weeks, then randomised them either to continue or to switch to placebo for a further 48 weeks. The continuing group carried on losing, by around eight per cent on average over that period. The group switched to placebo regained, by around seven per cent on average. Same people, same support, same lifestyle programme — the only difference was the drug.

SURMOUNT-4 (Aronne, JAMA, 2024) did the equivalent with tirzepatide, with a 36-week lead-in before randomisation. Those who continued lost a further amount over the next year; those switched to placebo regained substantially — around fourteen per cent on average.

We report those figures as trial outcomes with their spread, not as a forecast for you, and certainly not as something to fear in advance. The individual variation in both trials was wide.

What they establish is the central point of this guide, and Benedikt states it flatly: regain after stopping is a pharmacological finding. It happened in randomised, blinded conditions, to people who had done nothing differently, because the drug was withdrawn. It is not evidence of weak character, and anybody who tells you otherwise is arguing with a randomised controlled trial.

What the weeks afterwards tend to feel like

From several hundred accounts in the circle, plus the pharmacology.

These medicines do not leave your system the day you stop. Long-acting agents have half-lives measured in days, so it takes some weeks for the effect to fade — which means most people describe a gradual return rather than a cliff. There is no withdrawal syndrome in the sense of dependence; you are not detoxing from anything.

What tends to come back, roughly in order:

• Appetite, usually first and often noticeably. Meals stop being an effort and start being an event again.
• Food noise, for those who had it quieten. Members describe this as the hardest part by some distance — not the eating, but the return of the constant background negotiation. Food noise covers the ground.
• Digestion normalising. Gastric emptying returns to its old pace. Some people are delighted; a few find reflux or constipation take a while to sort themselves out.
• Energy, often for the better. Fatigue that had become the background hum sometimes lifts.
• Glucose, if you have type 2 diabetes. This is the one that needs a plan rather than an observation, and it is covered below.

Kiki, who came off for eight months over a shortage, wrote that the strangest part was how quickly it stopped feeling remarkable — that within about six weeks it was simply how things were, and the anticipation had again been worse than the event.

What to arrange before you stop, if you can

Sometimes there is no warning — supply vanishes, or funding ends. But where there is a choice, these are what the circle recommends.

• Tell your prescriber, even if the decision is yours and final. Especially if you take insulin or a sulfonylurea, where doses may need adjusting upward again as glucose changes, and especially if the drug was prescribed for cardiovascular or kidney reasons rather than weight — in that situation stopping changes a risk calculation and deserves a conversation rather than a shrug.
• Ask about monitoring. If you have type 2 diabetes, an A1c at some sensible interval afterwards is a reasonable thing to arrange. See the type 2 summary.
• Keep the strength work. The single most repeated piece of advice from members who have stopped. Muscle is what you keep, and it is far easier to maintain than to rebuild. Keeping your strength and protein and strength.
• Keep eating properly. The instinct to compensate by restricting is strong and it is the thing most likely to send this somewhere unpleasant. If that pull is familiar, read the warning signs guide first.
• Stay somewhere. People who vanish from their circles when they stop have a harder time of it than people who stay and say how it is going. That observation is ours, not a trial finding, but it is very consistent.

On tapering, honestly

The most frequent question in the circle is whether coming down gradually is better than stopping outright. The honest answer is that nobody knows.

No trial has compared tapering with abrupt discontinuation. STEP 4 and SURMOUNT-4 both switched people straight to placebo. There is no evidence that a taper reduces regain, and no evidence that it does not. Some prescribers step people down and some do not, and both are practising reasonably in the absence of data.

There are arguments for a taper that do not depend on trial evidence: it can be gentler if you are anxious about the change, it spreads a supply problem, and it gives you a period to notice what is coming back while you still have some medicine in play. There are arguments against: it prolongs the transition and gives some people a longer stretch of uncertainty.

What we will not do is give you a tapering schedule. That is dose advice, it belongs to your prescriber, and anyone in a comment section handing out step-downs is doing something we would ask them not to do here. What you can do is take the question to your prescriber with the honest framing: there is no evidence either way, what would you suggest for me?

If weight returns

It often does, wholly or partly, and this section exists because that fact is so widely used as a stick.

The trials above establish that the drug was doing the holding. When it stops, the physiology it was countering — appetite signalling, energy expenditure, the whole apparatus that defends body mass — resumes. That apparatus is not a character defect. It exists in everyone, it has been described in humans since long before these medicines, and it does not care how disciplined you are.

So: no self-recrimination in the circles, and none in your own head if we can help it. We do not post about regain as failure and we will gently interrupt anyone who frames it that way, including when the person doing the framing is talking about themselves. Our community agreements cover this and Benedikt enforces it kindly and without exception.

Restarting is common, unremarkable, and not an admission of anything. So is not restarting. So is restarting a year later, or trying something different entirely. Petra, who came off and stayed off, and Mark, who came off twice and went back both times, hold roughly equal status in the circle, which is exactly how we want it.

What we would ask is that you keep talking to somebody through it, and that the somebody includes a clinician if anything about your health is changing. The rest of it — the shape it takes, how you feel about it, what you do next — belongs to you.