New Website Allows Provider Consultations for Patients With Restless Leg Syndrome

A Massachusetts General Hospital clinician-researcher has launched a website where healthcare providers can get brief consultations on the management of specific patients with restless legs syndrome (RLS). RLS Curbside aims to disseminate the latest management advice about this complex condition. These free online curbside consultations are provided by RLS experts and are HIPAA-compliant. Development of the site was supported by a grant from the Baszucki Group.

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"RLS has been described in the medical literature for hundreds of years. But awareness among physicians and patients only increased 20 years ago, when the first medications were approved by the Food and Drug Administration," says John Winkelman, MD, PhD, chief of the Sleep Disorders Clinical Research Program at Mass General. "Dopamine medicines proved very effective in the short-term treatment of RLS. But it has become clear that over the intermediate to long term, they worsened restless legs symptoms."

RLS: A Movement Disorder and Sleep Disorder in One

RLS is a neurological movement disorder that is also "a recipe for a sleep disorder," Dr. Winkelman explains. "People with RLS experience this very uncomfortable, unrelenting crawling feeling deep in the legs when they're lying down or sitting at night. Patients sometimes describe it as 1,000 angry ants under the skin or a toothache in the legs."

These sensations are associated with a need to move. Lying in bed, riding in a car or plane, or even sitting through a movie may feel impossible. The feeling gets temporarily better with standing or walking, until they lie back down, so many people find themselves up all night, standing to maintain relief.

An RLS diagnosis meets four criteria, as described by the acronym URGE:

• U: RLS causes an unpleasant and irresistible urge or need to move the legs.
• R: The sensation is present only at rest.
• G: The feeling gets better or goes away with movement.
• E: Episodes occur predominantly in the evening or at night.

Between 2% to 3% of adults experience clinically significant RLS, with moderately severe symptoms at least twice a week. In these people, the condition is very disruptive to sleep and associated with a variety of other negative consequences.

RLS Augmentation After Treatment With Ropinirole or Pramipexole

RLS is thought to be a consequence of brain iron deficiency, which can cause dopamine dysregulation, a neurotransmitter that helps control movement. Twenty years ago, research by Dr. Winkelman and others showed that the dopamine agonists ropinirole (Requip) and pramipexole (Mirapex), also used (at much higher doses) for Parkinson's disease, were very effective in controlling RLS symptoms.

However, those FDA-approval studies followed patients for only 12 weeks, "wholly inadequate when people are going to be using these medicines for years and years," Dr. Winkelman notes.

Over time, he and other specialists started to notice a phenomenon they termed augmentation. Although dopamine agonists were initially effective, symptoms eventually started earlier in the day, became more severe, happened more frequently, and affected the upper extremities. In response, many healthcare providers increase the dosages of the medications.

"These medicines are seductive because they are so good in the short term. But they often lead to RLS augmentation, which is insidious over a period of years. People end up on doses of these medicines that are well above what they should be," Dr. Winkelman says.

He recently documented this overprescribing trend in a study published in Sleep. The research found that 20% to 30% of people with RLS are taking dopamine agonist doses that are above the FDA's maximum recommended dose for the condition. Of those, half take more than 150% of the recommended dose.

Then, if augmentation is recognized, managing it is challenging. "It is very difficult for people to reduce or stop these medications because they have a very bad withdrawal that is experienced as a terrible worsening of restless legs symptoms. People become dependent on the medication, and I really think of them as addicted," Dr. Winkelman says.

Now, he says, most of the patients with RLS that he and his colleagues see have augmented RLS.

Ways to Manage RLS Augmentation

Dr. Winkelman says that many primary care providers and sleep specialists aren't unaware of augmentation or alternatives to dopamine agonists.

He launched RLS Curbside at the end of 2023 to spread the word. The website is a forum where licensed health care practitioners can present brief clinical histories for patients with refractory or augmented RLS and get specific, evidence-based management answers. A grant from the Baszucki Group supports it, it is free to use, HIPAA-compliant, and is free from commercial influences.

"Healthcare providers are really in a bind when they have patients on high-dose dopamine medicines. They realize there's a problem, but they don't know how to get themselves out," Dr. Winkelman says. "Will Rogers said, 'If you find yourself in a hole, stop digging.' This is good advice for doctors who are giving these medicines: Stop increasing the dose."

RLS Curbside helps providers with questions about specific patients to understand other options for RLS, such as:

• Alternative medications, including gabapentin and pregabalin
• Iron supplementation, either oral or IV
• Devices that use transcutaneous electrical nerve stimulation to stimulate the peroneal nerve
• Use of low-dose opioids in refractory RLS

Dr. Winkelman speaks internationally about treatment options for RLS and RLS augmentation. In addition, he is chairing the American Academy of Sleep Medicine's taskforce that is revising the clinical practice guidelines for RLS. The proposed revisions were recently released for public comment.

Learn more about the Sleep Disorders Clinical Research Program

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