Loss of bowel control
For now, Wegovy and Saxenda are the only GLP-1 agonist shots authorized for weight loss, and their maker, Danish drug company Novo Nordisk, is facing its second shortage of Wegovy amid growing demand.
Personal stories online about semaglutide range from overwhelmingly positive – just what some need to win a lifelong battle with obesity – to harsh scenarios with potentially long-term health consequences, and everything in between.
One private community on Reddit is dedicated to a particularly unpleasant side effect: loss of bowel control while sleeping. Others have reported uncontrollable vomiting.
Kimberly Carew of Clearwater, Fla., started on .5 milligrams of Ozempic last year after her rheumatologist and endocrinologist suggested it to treat her type 2 diabetes. She was told it came with the bonus of weight loss, which she was hoping would help with her joint and back pain.
But after she increased the dose to 1 milligram, her GI symptoms, which started out mild, became unbearable. She couldn’t keep food down, and when she vomited, the food would often come up whole, she said.
“One night I ate ramen before bed. And the next morning, it came out just as it went down,” said Ms. Carew, 42, a registered mental health counseling intern. “I was getting severe heartburn and could not take a couple bites of food without getting nauseous.”
She also had “sulfur burps,” a side effect discussed by some Ozempic users, causing her to taste rotten egg sometimes.
She was diagnosed with gastroparesis. Some types of gastroparesis can be resolved by discontinuing GLP-1 medications, as referenced in two case reports in the Journal of Investigative Medicine.
Gut hormone
GI symptoms are most common with semaglutide because the hormone it imitates, GLP-1, is secreted by cells in the stomach, small intestines, and pancreas, said Anne Peters, MD, director of the USC Clinical Diabetes Programs.
“This is the deal: The side effects are real because it’s a gut hormone. It’s increasing the level of something your body already has,” she said.
But, like Dr. Apovian, Dr. Peters said those side effects can likely be avoided if shots are started at the lowest doses and gradually adjusted up.
While the average starting dose is .25 milligrams, Dr. Peters said she often starts her patients on about an eighth of that – just “a whiff of a dose.”
“It’ll take them months to get up to the starting dose, but what’s the rush?”
Dr. Peters said she also avoids giving diabetes patients the maximum dose, which is 2 milligrams per week for Ozempic (and 2.4 milligrams for Wegovy for weight loss).
When asked about the drugs’ side effects, Novo Nordisk responded that “GLP-1 receptor agonists are a well-established class of medicines, which have demonstrated long-term safety in clinical trials. The most common adverse reactions, as with all GLP-1 [agonists], are gastrointestinal related.”
Is it the drug or the weight loss?
Still, non-gastrointestinal side effects such as hair loss, mood changes, and sunken facial features are reported among semaglutide users across the Internet. While these cases are often anecdotal, they can be very heartfelt.
Celina Horvath Myers, also known as CelinaSpookyBoo, a Canadian YouTuber who took Ozempic for type 2 diabetes, said she began having intense panic attacks and depression after starting the medication.
“Who I have been these last couple weeks, has probably been the scariest time of my life,” she said on her YouTube channel.
While severe depression and anxiety are not established side effects of the medication, some people get anhedonia, said W. Scott Butsch, MD, MSc, director of obesity medicine in the Bariatric and Metabolic Institute at Cleveland Clinic. But that could be a natural consequence of lower appetite, he said, given that food gives most people pleasure in the moment.
Many other reported changes come from the weight loss itself, not the medication, said Dr. Butsch.
“These are drugs that change the body’s weight regulatory system,” he said. “When someone loses weight, you get the shrinking of the fat cells, as well as the atrophy of the muscles. This rapid weight loss may give the appearance of one’s face changing.”
For some people, like Ms. Mendenall, the side effects are worth it. For others, like Ms. Carew, they’re intolerable.
Ms. Carew said she stopped the medication after about 7 months, and gradually worked up to eating solid foods again.
“It’s the American way, we’ve all got to be thin and beautiful,” she said. “But I feel like it’s very unsafe because we just don’t know how seriously our bodies will react to these things in the long term. People see it as a quick fix, but it comes with risks.”
A version of this article first appeared on WebMD.com.