By Jacob Wittorf, OIFE Board Member

For many people with OI, excess weight adds to pain and limits mobility. In Aarhus, Denmark, doctors have made weight a regular part of care, helping patients discuss a sensitive topic in a supportive and practical way.

At the OI clinic at Aarhus University Hospital in Denmark, conversations about weight have become routine. Every patient goes through a structured questionnaire with their doctor, and weight is now one of the topics addressed.

“We introduced this because several of our patients had raised the issue themselves. That told us others might be struggling too, but were not comfortable bringing it up,” says Dr. Jannie Dahl Hald from the Department of Endocrinology at Aarhus University Hospital.

She points out that excess weight can be a particular challenge for people with OI, as it may lead to greater immobility and increased pain on top of what they already experience.

“It can have a very negative impact on people’s lives. It can make it harder to get around and have serious consequences for both social life and working life. At the same time, we also see that overweight among OI patients in some cases can lead to breathing problems,” she says.

The standard advice given to people who want to lose weight is to create a calorie deficit. This means burning more calories than you consume. In practice, this usually requires both an increase in physical activity and a reduction in calorie intake.

Weight loss can be difficult with OI
However, this is easier said than done for people with OI, who often have limited opportunities for exercise. This is also likely one of the reasons why people with OI may be particularly vulnerable to weight problems.

Furthermore, overweight may increase risk of type two diabetes, heart disease and sleep apnoea.

“If you have OI, you cannot necessarily manage the 30 minutes of daily exercise that is the general recommendation,” she says.

Jannie Dahl Hald also points out that people who are short in stature, as is the case for some individuals with OI, need fewer calories and may benefit from different dietary advice than their peers.

New weight-loss medication on the rise
For many years, severe obesity has been treated with surgery such as gastric sleeve procedures. But in recent years, a new and revolutionary medical solution has emerged in the form of the so-called GLP-1 drugs, such as Ozempic and Wegovy from Novo Nordisk, and Zepbound and Mounjaro from Eli Lilly.

These drugs mimic the natural hormone GLP-1, which is produced in the gut after meals and leads to an increased feeling of fullness and reduced appetite. This can result in dramatic weight loss of up to 25–30 percent of body weight.

In addition, the drugs have also been shown to reduce the risk of serious cardiovascular problems.

Not without challenges for people with OI
Several patients at Jannie Dahl Hald’s OI clinic have been treated with this type of medication and have experienced significant weight loss.

But despite the impressive effects, she emphasizes that they are not without problems for OI patients.

“When you experience such rapid and significant weight loss, it will—regardless of the method—inevitably lead to a loss of bone mass and muscle mass. I have had patients in my clinic who have suffered fractures where I suspect the dramatic weight loss may have played a role,” she says.

Therefore, weight-loss medication is not always the first tool she recommends. Usually, she advises patients to first try to put attention towards dietary changes and lifestyle adjustments and, if necessary, seek guidance from a dietitian.

Only if this does not achieve the desired results does weight-loss medication become an option.

“But there can also be situations where the patient judges that an increased risk of fractures is worth it, because obesity has such a severe negative impact on their life and overall health,” she says.

Loss of bone mass is seen with significant weight loss in everyone, but if you have OI, you are naturally more vulnerable than the general population.

“That’s why I would be more cautious if someone with a severe form of OI type 3 started on weight-loss medication than if it was a person with a very mild form of OI type 1,” she says.

At the same time, she stresses that she would not hesitate to recommend immediate use of weight-loss medication if the patient has breathing difficulties or serious cardiovascular disease that could be life-threatening.

“But the most desirable thing is if people can avoid overweight and maintain a stable weight throughout their lives,” she says.

In cases where people with OI use weight-loss medication, she usually recommends combining it with bone-strengthening treatment.

“For example, if you are not receiving bisphosphonates, this could be a good reason to consider this option. And if you are already on treatment but about to phase out, it may be wise to continue until the weight loss is completed,” she says.

Similarly, she recommends coordinating with a physiotherapist who can help with training methods to strengthen muscles and bones during the weight-loss process.

She also usually increases the frequency of bone scans while the individual with OI is planning a weight loss.

“I would normally ensure that people undergoing major weight loss are have a DXA scan once a year during that period. But we also know that scans don’t always tell the full story, and that it is fractures that really matter,” she says.

She also advises considering dosage levels carefully.

“With Wegovy, you typically start with a small dose of a quarter of a milligram for the first weeks before increasing to higher doses. In such cases, I would probably not recommend going all the way up to the maximum dose in a patient with severe OI,” she says.

If you were to give one final piece of advice to people with OI who want to lose weight, what would it be?

“My advice would be to start by talking about it and making a plan. I think it is important to have support from both family and friends, but also to get professional guidance,” she says.