ORLANDO, Florida—Tucker Howe, 13, has been taking corticosteroids for the last 10 years, ever since doctors determined he had Duchenne muscular dystrophy (DMD). And like many boys with Duchenne, Tucker struggles with obesity.
“We started him off on deflazacort [Emflaza] really early, right around his third birthday, because he was on the weaker side, even for Duchenne boys,” said his father, Jordan Howe, of Salem, Illinois. “He was on it for a long time, but over the years he started putting on more and more weight.”
Hoping to slow the treatment-induced gain, the boy’s doctor shifted him to vamorolone (Agamree) following that therapy’s October 2023 approval by the U.S. Food and Drug Administration (FDA). But Tucker continued to get heavier, at one point reaching 125 pounds.
Then in June 2025, Howe and his son’s doctors decided to try a new class of drugs — glucagon-like peptide 1 (GLP-1) receptor agonists — that have proven effective in treating obesity for millions of Americans.
Tucker began taking weekly injections of semaglutide (Wegovy) that, so far, seem to be helping him.
“We started with the lowest dose of 0.25 mg, and it took some time. We had to be really particular with when he took it,” Howe said. “It needs to be the same time of day every week, but after two or three weeks on that dose, the side effects went away.”
Currently, he said, “Tucker weighs 120 pounds and we’ve managed to get him up to 0.5 mg and then 1 mg.”
Franklin Griffin, 16, of Concord, North Carolina, has a similar problem. Diagnosed with Duchenne 10 years ago, Franklin is 5 feet, 4 inches tall and at one point weighed over 200 pounds.
“He wasn’t happy about gaining weight and not being able to move as freely as he did when he was younger,” said Franklin’s father, Jay Griffin. “We changed his diet and gave him exercises to do, but still he gained weight. It was frustrating for him, and also frustrating for us because we were adjusting our own diets and lifestyle to try to help him.”
At Griffin’s urging, doctors started his son on semaglutide at 0.5 mg. Franklin is currently taking 8.8 mg, the highest dose possible, and has dropped to 183 pounds without any noticeable side effects.
“I’ve been telling physicians they should push boys to take Wegovy from the beginning,” Griffin said. “They can talk about diet and exercise, but Wegovy should be part of the regimen too.”
‘Exciting time’ to be treating obesity
Dr. Jaime Moore is an assistant professor of pediatric nutrition at Children’s Hospital Colorado in Aurora and medical director of its Lifestyle Medicine Clinic, which treats pediatric obesity.
“The obesity pandemic in the U.S. began in the 1980s, and since then, it’s been a tough space, with lots of bias due to the disease of obesity itself,” she said. “So now, this is a really exciting time for our field, and the pipeline now includes multiple weight loss medications.”
The timing, in fact, couldn’t be better. Novo Nordisk, the Danish pharmaceutical company that developed the blockbuster drug — marketed as Ozempic to treat diabetes — is about to lose patent protection in countries that represent around 40% of the world’s population. India and China alone are reported to have 800 million adults battling obesity.
In the United States and Europe, however, semaglutide is expected to remain under patent protection until the early or mid-2030s, as is Eli Lilly’s once-weekly rival injectable tirzepatide (Mounjaro for diabetes and Zepbound for weight loss).
Opening the market to generic competition could drive drug prices to as low as $15 a month.
Dr. Moore, interviewed at the Muscular Dystrophy Association’s 2026 Clinical & Scientific Conference, said national guidelines urge pediatricians to offer weight loss drugs to people ages 12 and older with obesity in the 95th percentile.
The most common ones being prescribed are the GLP-1 receptor agonists as well as an oral medication — phentermine and topiramate [Qsymia] — that is cheaper and easier to access.
“Obesity, for a long time, has been viewed as a disease that someone could overcome with willpower. The medications we’re talking about can really help in combination with lifestyle changes,” Dr. Moore said.
GLP-1 drugs are hormone-mimicking medications that help patients feel less hungry. They enhance a sense of fullness, reducing the desire to eat.
“When it’s put in a medication formulation, it acts both on the brain and the [gastrointestinal] tract — along with other receptors throughout the body — to enhance that feeling of lower hunger and feeling satisfied with a smaller amount of food,” Dr. Moore said. “That’s essentially the basic mechanism of a GLP-1.”
In most cases, these drugs will need to be taken permanently to keep the weight off.
“The medicines we have at our disposal right now are viewed as chronic, just as we treat hypertension or diabetes,” she said. “If we remove those medicines, we wouldn’t expect blood pressure or blood sugars to magically return to normal. It’s the same with cholesterol.”
Listen to an interview with Dr. Jaime Moore on Rare Disease Advisor, a sister site to DMD Companion: An Interview With Dr. Jaime Moore on Obesity Medications and Pediatric Neuromuscular Disease
Physicians cautious about GLP-1 use with DMD
Relatively few clinical trials, however, have examined the safety and efficacy of GLP-1s in people with Duchenne. Dr. Moore said the largest study she has seen included no more than a couple dozen boys with DMD, enrolled alongside people with spina bifida and other disorders.
One possible reason for hesitancy might be the drug’s effects on muscle mass. While gastrointestinal issues — nausea, vomiting, diarrhea and constipation — are the most common side effects of GLP-1s, “clinical trials and real-world evidence consistently show” that such weight loss is accompanied by a “decrease in lean body mass, raising concern in patients already predisposed to muscle wasting,” scientists report.
Dr. Aravindhan Veerapandiyan a pediatric neurologist and associate professor of pediatrics at the University of Arkansas in Little Rock, agrees. GLP-1 receptor agonists do work to promote satiety and reduce caloric intake, leading to meaningful weight loss, he explained. They also may improve insulin resistance, glucose control, and other cardiometabolic parameters.
“However, their use in DMD requires caution,” he noted in an email. “Weight loss with GLP-1 therapy includes loss of lean muscle mass, which is a major concern in a condition already characterized by progressive muscle degeneration — and could potentially worsen function. Additional risks include gastrointestinal side effects, reduced nutritional intake, and possible exacerbation of underlying GI dysmotility.”
Given the lack of DMD-specific data, he added, “these therapies should be considered selectively, with careful monitoring of nutritional status and functional outcomes.”
Dr. Prasanth Surampudi, a clinical professor of medicine at the University of California-Davis, also favored caution.
“Our goal with the use of GLP-1 in DMD first is to use the lowest doses to limit appetite in hopes of limiting further weight gain. This approach can help maximize the beneficial effects of GLP-1s while balancing the risks,” said Dr. Surampudi, an endocrinologist who sees patients with Duchenne as well as other muscular dystrophies.
“As with any weight loss approach, individuals can lose both fat and muscle mass without adequate protein intake and engaging in resistance-based exercises,” he said. But since people with Duchenne often can’t do such exercises, “adequate protein intake could help mitigate concerns regarding changes in muscle mass with the use of GLP-1.”
Dr. Surampudi added that “providers should have an open discussion with the family and patient regarding the risks and benefits of GLP-1.”
Learn more about DMD treatment and care
Medications’ cost can be a barrier to use
Dr. Moore favors scientists in fields that include nutrition and obesity working together to “move the research program forward. That includes careful monitoring of not just weight loss but also body composition. Some of the most exciting early data we’re seeing is muscle tissue that’s less infiltrated with fat. This could have benefits for cardiometabolic status for patients with neuromuscular disease.”
In addition to targeted research, she added, insurance reimbursement remains a concern, given the cost of weight loss drugs in the U.S.
“Access to these medications remains a huge and important practical barrier,” she said, adding that coverage varies widely even for people with commercial plans.
Patients age 20 and younger who are the most vulnerable when it comes to state-based Medicaid programs, she added, could qualify for something known as the Early and Periodic Screening, Diagnostic and Treatment Program (EPSDT).
“In many states, this allows us to secure access to GLP-1 receptor agonists. The downside is that we need to have a transition plan when someone turns 21,” Dr. Moore said. “Improving access to evidence-based coverage is critical. This program will cover the indication of obesity — not just for comorbidities related to obesity — and that’s key.”
Potential roadblocks with ‘forever’ medications
Meanwhile, Tucker Howe is facing challenges in continuing with a GLP-1, his father said.
“Injections are uncomfortable and he’s got some needle issues. For almost two years, he was in a now-discontinued clinical trial for pamrevlumab, getting blood draws every other week, so he doesn’t love needles,” Howe said.
“If we’d had this conversation three months ago,” he added, “it would be nothing but rainbows and sunshine. But since then, he’s had other health issues crop up that have complicated the process.”
The boy, reliant for over a year on a wheelchair, has “started dealing more severely with anxiety and panic attacks. Prozac (fluoxetine), the medication they put him on for that, causes nausea, and he feels like he’s going to throw up all the time,” Howe said. “So we’re not sure at this point if the GLP-1 is going to be a forever tool.”
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