What happens when you stop taking them?

BBC Two women smile at the camera. The one on the left, Ellen, has long blonde hair. The one on the right, Tanya, has long red hair.BBC

Ellen and Tanya lost weight using GLP-1, but they had very different experiences with stopping the drug.

Ruth Clegg,Health and Wellness ReporterAnd

Holly Jennings

“It's like a switch turns on and you instantly starve to death.”

Tanya Hall tried several times to stop taking weight loss medications. But every time she stops the injections, the eating noise returns. Loud.

Weight loss injections, or GLP-1, have done for many what diets never could. That constant background noise that encourages them to eat even when they're full is turned off.

The drugs have given those who never thought they could lose weight a new body shape, a new outlook on life and, in many cases, a completely different life.

But you can't keep taking them forever, can you? Or can you? Well, this is one of the problems that no one really knows.

These are new drugs that mimic GLP-1, a natural hormone that regulates hunger, and the potential side effects of long-term use are just beginning to emerge.

And with an estimated 1.5 million people in the UK paying privately for injections, staying on them long-term is not a cheap proposition.

So what happens when you try to stop? Two women with two completely different stories, but with the same goal – to lose weight and keep it off – tell us what it was like for them.

Tanya Hall Three photos of Tanya at different stages of losing weight. In the first photo on the left she is wearing a gray top, in the middle photo she is at the gym, and in the third photo she has lost weight, is wearing a white corset and is smiling at the camera.Hall asked

Tanya says her hair “came out in clumps” when she first started taking the medication.

“It was like something opened up in my mind and said, 'Eat everything, keep going, you deserve it because you haven't eaten anything for so long.'

Tanya, a sales manager for a large fitness company, first started taking Wegovy to prove a point. She was overweight, felt like an “imposter” and thought her opinion was not valued in the industry because of her size.

If she were thinner, would she be taken more seriously?

Ultimately, she says her suspicions were correct. After she started using the injections, people came up to her and congratulated her on her weight loss. She felt that she was treated with great respect.

However, during the first few months of treatment, Tanya had trouble sleeping, felt nauseous all the time, had headaches, and even began to lose her hair, which could not be directly related to the drug, but as a potential side effect of rapid weight loss.

“My hair was falling out in clumps,” she recalls. But in terms of weight, she got the results she was hoping for. “I lost about three and a half stone.”

Now, more than 18 months later, what started as a small experiment has turned into a complete life change. She lost six stone (38kg) and tried to break away from Vegovoy several times.

But every time, in just a few days, she says she eats so much food that she becomes “completely terrified.”

Should she continue to take her medications and live with all the side effects that come with them, or take a leap into the unknown?

Wegovy's maker, Novo Nordisk, said treatment decisions should be made with your healthcare provider and that “side effects should be taken into account.”

Stopping taking weight-loss drugs can feel like “jumping off a cliff,” says lifestyle GP Hussain Al-Zubaidi.

“I often see patients who stop taking the drug when they are on the highest dose because they have reached their goal and then stop taking it.”

It can be like being caught in an “avalanche or tsunami,” Dr. Al-Zubaidi said. The eating noise returns as quickly as the next day.

He says current evidence suggests that within one to three years of stopping the medication, people will see “a significant amount of weight” return.

“Anywhere from 60 to 80% of the weight lost will return.”

Ellen Ogley is determined to prevent this from happening. She decided to start taking weight loss medication because she had reached a “key turning point” in her life. She was so overweight that she had to sign a waiver acknowledging that she might not survive life-saving surgery.

According to her, starting work on Mujaro was her “last chance to get it right.”

“I was an emotional overeater,” she says.

“If I was happy, I would overeat. If I was sad, I would overeat. It didn’t really matter, I didn’t have a filter at all.”

But when she started using the injections, “all of that switched off.”

Ellen, a woman with long blond hair, sits on the couch and smiles at the camera.

Ellen says she completely changed her relationship with food while taking weight-loss drugs.

Living without the noise associated with food gave Ellen the opportunity to change her relationship with food. She started reading about nutrition and creating a healthy diet that would help nourish her body.

She took the medication for 16 weeks before tapering off, tapering off the dose over six weeks. She lost her third 7 pounds (22 kg).

As she lost weight, she found she could exercise more, and when she felt “low”, instead of “going to the cupboards and stuffing my face”, she would go for a run.

But when Ellen stopped taking Mujaro, she started to notice her weight increasing, which she says “made my head a little messy.”

This is why the right support is critical, says Dr Al-Zubaidi. The British Medical Regulatory Authority has recommended that patients receive at least a year of ongoing counseling and personalized post-treatment plans, helping them make practical changes in their lives so they can lose weight and, most importantly, stay healthy.

But for those who pay for their medications privately, like Tanya and Ellen, such support is not always guaranteed.

Over the past few months, Tanya's weight has remained the same and she feels that the medications have little effect. But she has no intention of giving it up, she says.

She has finally reached a weight she feels comfortable with, and every time she tries to stop, the fear of quickly gaining weight again becomes too much and she finds a reason to go back on the medication.

“I was overweight for the first 38 years of my life and now I’m six stone (38kg) lighter,” says Tanya.

“So part of me feels like I have an addiction to keep doing this because it makes me feel the way I do, it makes me feel like I'm in control.”

She stops for a second. “Maybe it’s the other way around,” she muses, “maybe the drug is controlling her.”

Ellen Three side by side photos of Ellen at different stages of her weight loss. In the leftmost photo she is larger, wearing a green dress, in the middle photo she is at the gym, and in the last photo she is slim, wearing blue jeans and a black top.Ellen

Ellen has continued to lose weight since she stopped taking weight loss medications.

“It’s all about having an exit strategy,” explains Dr. Al-Zubaidi. “The question is, what are these people’s experiences after they come off the injection?”

He worries that without more support for people making the transition, there will be little change in society's unhealthy attitudes towards food.

“The environment in which people live should promote health, not weight gain.

“Obesity is not GLP-1 deficiency,” he says.

In a sense, many people play a game of weight loss roulette when it comes to stopping their weight loss medications. Factors such as lifestyle, support, mindset and timing influence how the post-GLP-1 future unfolds.

Tanya continues to take her medication and is fully aware of the pros and cons of this decision.

Ellen feels this chapter is closed. She has now lost more than eight stone (51kg).

“I want people to know that life after Munjaro can also be sustainable,” she says.

Eli Lilly, the company that makes Mounjaro, says that “patient safety is Lilly's top priority” and that it is “actively involved” in monitoring, evaluating and providing information to regulators and prescribers.

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