The Hidden Risks of Ozempic and Wegovy in Ehlers-Danlos Syndrome patients

GLP-1 receptor agonists like Ozempic and Wegovy have surged in popularity as treatments for type 2 diabetes and weight loss. These medications work by mimicking the hormone GLP-1, which helps regulate blood sugar and slows the movement of food through the digestive system. While these effects are beneficial for many, growing concerns have emerged about serious side effects—particularly for individuals with underlying conditions like Ehlers-Danlos Syndrome (EDS) and Mast Cell Activation Syndrome (MCAS). Conditions such as Long COVID and Polycystic Ovary Syndrome (PCOS) also pose unique risks with GLP-1 treatments.

What Is Gastroparesis, and How Are GLP-1 Drugs Linked to It?

Gastroparesis occurs when the stomach empties too slowly, leading to symptoms like nausea, vomiting, bloating, and abdominal pain. GLP-1 drugs can exacerbate or trigger this condition by further slowing gastric emptying. Although the risk is considered low, the sheer number of people using these drugs means that "hundreds of thousands" of cases could potentially arise worldwide.

For individuals with Ehlers-Danlos Syndrome (EDS), the risks are heightened. EDS affects connective tissue throughout the body, including the gastrointestinal tract, making people with the condition more susceptible to digestive issues like dysmotility, where food moves irregularly through the gut. The added effects of GLP-1 drugs can further disrupt an already fragile digestive system.

How GLP-1 Drugs Affect Patients with Ehlers-Danlos Syndrome

EDS patients already face significant digestive challenges due to their underlying condition. A study published in Clinical and Translational Gastroenterology found that EDS patients are disproportionately affected by idiopathic gastroparesis. Given these pre-existing vulnerabilities, GLP-1 receptor agonists could make symptoms much worse.

In various online forums, many EDS patients have reported adverse side effects from GLP-1 drugs. While some report positive outcomes, around half of the respondents mention delayed gastric emptying, severe constipation, and nausea. These issues can be severe enough to disrupt daily life, with some patients describing their experiences as "miserable" due to nausea and vomiting.

The Connection to Mast Cell Activation Syndrome (MCAS)

Mast Cell Activation Syndrome (MCAS) complicates the use of GLP-1 drugs for some individuals. MCAS occurs when mast cells release excessive amounts of chemicals, causing inflammation and a range of symptoms, including digestive problems. MCAS is more common in patients with EDS, adding another layer of complexity.

Interestingly, some patients with Mast Cell Activation Diseases report that GLP-1 drugs alleviate their symptoms, as seen in a recent case study where a patient with chronic systemic mastocytosis experienced complete symptom resolution after starting semaglutide. However, the slowed gastric emptying caused by these medications can worsen GI symptoms in others, making it critical to assess each patient’s unique response. It worth noting that treatment of any underlying mast cell activation may help patients lose weight without GLP-1 drugs.

Long COVID, PCOS, and GLP-1 Drugs

Patients with Long COVID and Polycystic Ovary Syndrome (PCOS) also face risks when using GLP-1 drugs. For people with PCOS, GLP-1 agonists can help manage insulin resistance and promote weight loss. However, research has found that semaglutide delays gastric emptying in women with PCOS, leading to potential discomfort and digestive issues (Smieszek et al).

Similarly, individuals with Long COVID often suffer from GI symptoms and autonomic dysfunction. Recent studies indicate that post-viral gastroparesis, including cases following COVID-19 infections, can persist and may lead to delayed gastric emptying. With an estimated 50 million people suffering from Long COVID globally, the potential impact of GLP-1 drugs on this group is significant. For some, the drugs may worsen existing digestive issues, leading to prolonged recovery.

Post-Viral Illness and Long COVID: Increased Risk of Gastroparesis

Viral infections are a recognized trigger for gastroparesis, and COVID-19 is no exception. Cases of gastroparesis flaring up after COVID-19 have been documented, highlighting the potential for the virus to exacerbate existing gastrointestinal issues. In some patients, the viral infection seems to target cells in the GI tract, leading to delayed gastric emptying, nausea, vomiting, and other severe symptoms. This effect is likely linked to the virus’s ability to invade cells using the ACE-2 receptor, which is also found in the gut.

One case study documented a patient with diabetic gastroparesis who experienced a severe flare-up of her symptoms following a COVID-19 infection. Her symptoms were resistant to typical pharmacological treatments and only improved as her COVID-19 symptoms subsided. This suggests that COVID-19 may exacerbate underlying conditions like gastroparesis, making it harder to manage for those already suffering from digestive disorders.

Furthermore, a retrospective study on gastroparesis following viral infections found that young and otherwise healthy individuals can develop gastroparesis after viral illnesses, including post-COVID gastroparesis. These cases can persist for months, and while some patients recover fully, others continue to struggle with delayed gastric emptying long after the initial infection.

Given the vast number of people affected by Long COVID, the implications are serious. With millions potentially at risk for developing or exacerbating gastroparesis, the use of GLP-1 drugs in this population requires careful consideration.

Medical and Regulatory Perspectives

Medical experts are advising caution when prescribing GLP-1 drugs to patients with gastrointestinal vulnerabilities. The American Society of Anesthesiologists recommends that patients stop these drugs one week before surgery to avoid complications such as food regurgitation and aspiration during surgery. This is particularly concerning for EDS patients, who may already experience poor wound healing and other complications due to their connective tissue disorder.

The FDA has also updated warning labels for GLP-1 drugs, including Ozempic, to highlight the risks of blocked intestines and gastroparesis. While the agency is still investigating the full extent of these risks, the warning serves as a reminder for individuals with complex health profiles to proceed with caution when considering these medications.

Conclusion: Weighing the Risks and Benefits

While GLP-1 receptor agonists like Ozempic and Wegovy offer significant benefits for managing diabetes and obesity, they also carry serious risks, especially for individuals with conditions like Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, and those recovering from viral illnesses like COVID-19. Patients with Long COVID or PCOS should be aware of potential complications and carefully monitor for any adverse effects. Close collaboration between patients and healthcare providers is essential to ensure that these powerful drugs are used safely and effectively.

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References

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