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Coming off

I stopped at week nine. I would like to say why, out loud, once

Started 29 August 2025 · 7 replies · 326 hearts · read 5.8k times

GrizelKirkcaldy, UK · 29 August 2025
11 months ago

Fife. Frank about the hard bits, which is what I put on my profile in January and I may as well live up to it.

I stopped three weeks ago, at week nine, and I have been avoiding this circle since because I did not want to be a cautionary tale in anybody’s thread.

Why. I work on my feet, in a kitchen, six shifts most weeks, and from about week six I could not get enough into me to do the job. Not because I was frightened of eating — I want to be clear about that, because I know it is the first thing people wonder. I would put a plate in front of myself with every intention and get four forkfuls in and simply be unable to continue. By week eight I was getting through a shift on a yoghurt and a slice of bread, and then on the Tuesday I went light-headed at the top of the steps to the cellar, sat down on the third step from the top, and my hands were shaking badly enough that Kenny took the tray off me.

That was the moment. Not a diagnosis, not an emergency — I did not go anywhere, I sat down and had a fizzy drink and was fine in twenty minutes. But I stood at the top of those steps and thought: I cannot be somebody who is light-headed on stairs while carrying things. That is the actual job.

I rang my prescriber on the Thursday and she agreed to stop, and she was kind about it, and she said something I keep thinking about — that a treatment you cannot live alongside is not the right treatment yet.

So that is it. Nine weeks, stopped, no drama, no shame that I can find in myself when I look for it, though I notice I have been braced for other people to find some on my behalf. Appetite has come back. Some of the weight has come back and I am choosing to report that as a fact rather than a confession.

109

BenediktFacilitatorVienna, Austria
#1

Grizel. Nothing in what you have written needs defending, and I want to answer the thing you did not quite ask, which is whether this room is going to be disappointed in you.

No. And structurally, not by accident — this is the one framing I do not allow in coming-off. Stopping is a normal outcome and so is some weight returning; the withdrawal data is reasonably clear on the second part and it is worth reading rather than dreading. In STEP 4, when semaglutide was withdrawn after twenty weeks, the group that stopped regained over the following year while those continuing did not (Rubino D, et al. JAMA. 2021;325(14):1414–1425). SURMOUNT-4 found a similar shape for tirzepatide (Aronne LJ, et al. JAMA. 2024;331(1):38–48). That tells you something about the medicine and nothing whatsoever about you.

What your prescriber said is the sentence of the month, and I hope she knows it.

56me too 12

BunnyWeston-super-Mare, UK
#2

Care home cook. Feeds everyone but me. Grizel, the cellar steps, the tray, Kenny taking it off you — I know every part of that and I have never seen anybody write it down.

Kitchen work is not compatible with four forkfuls and you cannot negotiate with a service. Anyone who has not done a shift on their feet does not know that the body has to actually work, not just exist.

47me too 9

TomásFacilitatorLisbon, Portugal
#3

One clinical note and then I will get out of the thread, because it belongs to Grizel.

What she describes — the light-headedness on the stairs, the shaking hands, weeks of not being able to get intake in — is exactly the kind of thing this community should treat as a reason to talk to a prescriber rather than a thing to push through. She rang on the Thursday. That was the right call and I would rather people copied that than admired it.

43me too 6

SaraOslo, NO
#4

Came off once and came back kinder to myself, so I am the after-picture of your situation, whether or not you ever want that.

The bit I recognise most is being braced for other people’s shame on your behalf. I carried that for months and it was heavier than the actual stopping. Nobody was ever disappointed in me. I had invented an entire audience.

49me too 13

MaisieScarborough, UK
#5

Seaside chip shop owner, irony fully noted, and I stopped at week eleven last year for reasons close enough to yours. Standing for nine hours in July with nothing in me was not survivable.

What I did differently the second time round — and this is not advice, just what happened — was that we talked about the job first and the schedule second. It has gone much better.

36me too 7

KeeleyBlackpool, UK
#6

Carer for my mum, barely thought about myself until now. The sentence about a treatment you cannot live alongside is going on my fridge.

Because that is the whole thing, is it not? It has to fit in the life you have actually got, not the one in the leaflet where you have time to lie down.

44me too 10

GrizelKirkcaldy, UK
#7

I have read this about six times today, mostly in the yard between services.

Sara, the invented audience. That is precisely it. Three weeks of dreading a room that turned out to be full of people who have done the same thing.

I am not planning anything at the minute. My prescriber wants to see me in the autumn and I might try again, differently, and I might not, and it turns out I am allowed to not know.

51me too 6

Facilitator note — Benedikt

Facilitator note — Benedikt. I am putting a note on this one because of a single phrase: I did not want to be a cautionary tale in anybody’s thread.

Grizel stayed away from a support circle for three weeks because she thought stopping made her a warning to other people. That is what the shame framing does, and it does it most to the people who need the room most. If you have stopped, for any reason at all — side effects, cost, a prescriber’s decision, a life that got too full — you are not an object lesson here. You are a member.

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