Too Few Lipedema/Lymphedema Treatment Options?

Two novel treatments may improve symptoms

Photo by Karolina Bobek on Unsplash. Water pressure is an effective therapy to reduce limb volume in lymphedema.

As someone living with the symptoms of lipo-lymphedema for over 40 years, I am constantly on the lookout for effective even novel treatments for this chronic, degenerative, and sometimes hidden health condition. My condition is primary, with lipedema complicating and compounding the lymphedema; however, many women have one condition or the other. And while some women are affected with secondary lymphedema that develops as a result of treatment for breast or genitourinary cancer, up to 11% of women worldwide live with lipedema of unclear disease origination, or pathogenesis. Interest in treatment modalities continues to grow even as research funding may be drying up. Women need information now on promising treatments, not excuses or the downplaying of their suffering.

Lipedema is a chronic disease of subcutaneous adipose tissue that predominantly affects women and is frequently associated with endocrinopathies such as insulin resistance and obesity. Its pathogenesis is still unclear, and treatment, which requires a multi-disciplinary approach, is prolonged over time and is not always effective. There is currently no drug treatment available for this disease. (A Case Study on the Efficacy of the Pharmacological Treatment of Lipedema: The Italian Experience with Exenatide)

In my experience of associated symptoms, I have swelling, ease of bruising, some joint immobility, localized adiposity (first of the legs then progressing to the upper arms with age), pain, and — in the earlier stages— pitting edema. Over the years, I have received various diagnoses, ranging from varicose veins to possible congestive heart failure. Doctors simply did not know what they were looking at and often shrugged and said I would simply have to live with it. The medical and cosmetic ramifications would not permit me to “just live with it,” so I worked to educate myself to find out what I could do on my own. In recent years, I have found professional organizations that focus on this issue, discovered communities of patients and advocates, and watched as the knowledge base about the disease has expanded. Perhaps ironically, the medical professionals with the most knowledge about lymphatic-related conditions are plastic surgeons.

With practice that focuses on appearance, plastic surgeons are invested in techniques that give the best aesthetic outcomes, which corresponds with knowing anatomy and lymphatic function almost better than any other specialty. Real plastic surgeons — with yearslong surgery residencies under their belts and a subspecialty in plastics acquired through further, rigorous training — are the pioneers of advances in the understanding and treatment of lymphatics. But we in the patient community are always looking for drug treatments either to avoid or complement the suite of available surgical interventions. My daughter is the one who found the world of lymphatic surgery specialists for me by perusing Instagram.

In July of this year, a study out of Italy (A Case Study on the Efficacy of the Pharmacological Treatment of Lipedema: The Italian Experience of Exenatide) gave us hope of a medical treatment that may prove efficacious by reporting the following:

• Five women with lipedema and insulin resistance were dosed weekly with exenatide, a GLP-1 agonist similar to semaglutide or tirzepatide
• Reduction in lipedema symptoms was observed, even in women who did not lose weight
• This approach could prove efficacious as a standalone treatment or in combination with surgical intervention

The study frames its conclusions thusly:

The improvement in symptoms and clinical signs of lipedema, in addition to the reduction in adipose tissue in patients with lipedema and insulin resistance with exenatide, suggests a novel pharmacological approach to the disease, which can be combined with other conservative and surgical treatments to promote weight reduction. These results also highlight the association of this disease with metabolic alterations and the fundamental role of an accurate diagnosis followed by the treatment of comorbidities and excess weight in these patients.

Interestingly, yet another drug commonly used to treat a different condition, notably ADHD, has applications in this complex, burdensome disease as well. Karen Herbst, MD, PhD, an endocrinologist at The Roxbury Institute in Tucson, prescribes dextroamphetamines for her lipedema and Dercum’s patients to great effect. In a recent social media post, Dr. Herbst says:

I have been using amphetamines, also known as sympathomimetic amines, for many years in people living with lipedema and Dercum’s disease. Nobody likes to prescribe controlled substances, it’s true, but the benefits that my patients get from the use of these sympathomimetic amines are incredible.

Sympathomimetic amines bind to adrenergic receptors that are directly on lymphatic vessels and induce them to pump. So, they pump more effectively, and they pump more often. So, they detox that interstitial space, and we know that that interstitial space between cells is very clogged in lipedema. So, pumping out the garbage that’s sitting in there is really important and can make you feel better and you can reduce the congestion in your tissue. The sympathomimetic amines also bind to blood vessels and decrease their diameter.

We know that blood vessels are leaky in lipedema and so, decreasing their diameter may decrease their leakiness. They also bind directly to adipocytes and cause adipocytes to release their fat. So, fat cells reduce in size, and we know that a lot of the fat cells in lipedema are enlarged. So, there’s weight loss associated with these medications and finally they improve focus, and they also improve energy.

And in terms of immune function, they are MAST cell stabilizers, M-A-S-T. They bind to muscles and reduce the MAST cells from releasing their contents so that you don’t get as much inflammation and certainly you don’t get as much swelling. I have over the years prescribed micro-doses of sympathomimetic amines, especially dextroamphetamine, which is short acting. So, if you take it in the morning, it shouldn’t affect your sleep and [as for] microdosing, using doses like 2.5 milligrams, 3 milligrams, 10 milligrams, no more than 20 milligrams a day really can dramatically improve the lives of a person living with lipedema or especially with Dercum’s disease, and it just works so great for lipedema or lymphedema.

Before prescribing amphetamines, Dr. Herbst consults with a cardiologist for any patient with a history of cardiovascular disease, but the doses she prescribes her patients are low enough that they do not elicit alarm. Her practical experience along with the observations from the Italian study give people like me hope and open the door to further research that may lead to more effective drug therapies for this debilitating, progressive disease.

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Anneliese Bruner is a writer-editor and Tulsa Massacre descendant. Her first screenplay, The Little Red Book: Stories of the 1921 Tulsa Race Massacre, earned semi-finalist status at the 2025 San Francisco International Screenwriting Competition & Film Awards.