What happens when you want to get off 'forever' weight-loss drugs

To afford the $400-or-so-monthly cost of the weight loss drug, she cancelled her personal trainer, stopped playing in a sports team and put her studies on hold. From December through April, she lost about 18 kilos, something she hadn’t managed to do with various diets and regular strength-based exercise (she can leg press an impressive 300 kilos).

But then the war. Petrol and food prices went up, and Kirsty, a 33-year-old single mother from the Manawatū region, could no longer afford Wegovy’s weekly injections.

GP discusses Wegovy's first year in New Zealand

Morning Report

“It’s really, really, really unfair that these medications are limited to those who can [afford it] and the rest of us are just met with ‘just lose weight. That’s easy'.

“If it was easy, I would have done it,” added Kirsty, who has Polyendocrine Metabolic Ovarian Syndrome (formerly PCOS), where a hormonal imbalance can lead to weight gain and inflammation.

Wegovy has been available in New Zealand for 12 months after years of success overseas. It and other GLP-1 drugs are labelled miraculous for benefits that go far deeper than weight loss, including reducing high blood pressure and treating sleep apnoea, kidney disease and severe liver disease. However, drug makers and doctors often frame them as “forever medications", with numerous studies indicating that those stopping a GLP-1 like Wegovy regain much, if not all, of their lost weight.

That’s a dilemma for many New Zealanders currently on the medication: fork out $400 a month indefinitely or risk returning to their pre-Wegovy life plagued with food noise, yo-yo dieting or perhaps yielding to obesity and the attached health risks. While some are holding out for potential government funding, others are hoping to defy the odds and stop Wegovy while maintaining their weight loss.

So far, Kirsty has managed to lose another kilo in the two months since stopping Wegovy, thanks to the drug's lingering effects. However, the intrusive thoughts about food have returned, and so has the inflammation in her face. Her painful periods - a symptom of PMOS -that had serendipitously stopped on the medication are ramping up again.

“You know, this just proved that there was something missing, and that my body wasn’t producing something or whatever the case might be.”

Alison, a woman in her 50s from Christchurch, is slowly reducing her Wegovy dose after losing 20 kilos in seven months. The food noise is returning, but she has maintained her weight loss so far.

“Having many, many weeks without food noise has been eye-opening and realising that you can go through life without needing a snack and that you don't need to be planning where your next meal is coming from.”

Her main driver for coming off Wegovy is financial. It’s also the side effects that include hair loss, extreme tiredness and nausea.

“It’s like when you’re pregnant and you have morning sickness, but it never goes away.

“So, it’s definitely not the easy option that people think it is.”

Dr Lara Courtenay, a weight-loss specialist at Auckland’s MacMurray Centre, is upfront with patients about the pitfalls of going off Wegovy, or the more expensive but more effective Mounjaro that is now available in New Zealand. Time and again with patients, she sees the set point weight theory in action. The theory frames each person as having a predetermined weight or weight range that the body will instinctively attempt to maintain.

“If you stop [Wegovy], your body is going to do everything it can to put it back on.”

Patients can keep weight off without medication, but if they do start to rebound, she encourages them to go back on the medication or plan to stay on a very low - and cheaper - maintenance dose for the long term.

“The thing that’s actually really dangerous is that if you lose weight and then put it all back on and lose it again, because every time you lose, you lose muscle mass and bone density and things like that.”

A systematic review of existing research, published earlier this year in the British Medical Journal, found that weight gain was four times faster for study participants who stopped medications like Wegovy than for those who stopped a conventional diet and exercise strategy.

Other research from the University of Cambridge also found the same rapid weight gain after obesity management medications stop. However, on average, participants managed to keep 25 percent of their initial weight loss in the long term.

Meal strategy that includes a high protein and high fibre diet becomes crucial when a patient comes off Wegovy or Mounjaro, says says Kylie Russell, a dietitian with weight loss clinic Rfynd. Bariatric surgery is an option for those who have the finances but had adverse side effects to to the medications, she added.

Rosie, a 44-year-old from Nelson who also has PMOS, predicts she will take Wegovy, or another version of it, for the remainder of her life. Since July she has lost 11 kilos on Wegovy to add to her 15 kilo weight loss on Saxenda, a less effective precursor to Wegovy.

“If I had something wrong with my blood pressure, I'd go on medication for it, and I wouldn't try to come off because this is a genetic condition or whatever,” says Rosie.

“So, I just try and think of it like that.”

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