BehindTheMedspeak: Restless Legs Syndrome

Jeanne Whalen wrote an excellent article about the history and current state of treatment of Restless Legs Syndrome (RLS) for this past Wednesday's Wall Street Journal.

In a sidebar she wrote:

The syndrome was first documented by English physician Thomas Willis in the late 1600s.

He said patients would experience "leaping and contractions of the tendons and so great a restlessness... that the diseased are no more able to sleep than if they were in a place of the greatest torture."

In 1923 German doctor Hermann Oppenheim was the first to describe the syndrome as a neurological disorder.

He also noted that the condition can "last for years and decades and can be passed on and occur in other members of the family."

Swedish neurologist Karl Ekbom coined the name Restless Legs Syndrome in 1944.

The disorder is sometimes called Ekbom's Syndrome in his honor.

Whalen also provided links to the following related websites:

www.rls.org — The RLS Foundation

www.wemove.org — We Move, a support group

www.restlesslegs.org.uk — The UK website

Here's the story.

Drug Approved for Restless Legs

Patients with Restless Legs Syndrome often have a hard time describing the symptoms.

Some say they feel a creeping, crawling sensation or an irresistible urge to move their legs.

Others liken it to having a bottle brush twisted up and down inside their calves.

Most agree that the symptoms worsen at night.

Walking or pacing a room can provide temporary relief, as can rubbing or hitting the legs.

But patients say the uncomfortable prickling can take a real toll, leaving them unable to sleep or to sit still to watch a movie or read a book.

Severe symptoms may cause long-term sleep deprivation that can shave years off a person's life, researchers say.

Patients say the disorder is made worse by the skeptical looks others give them.

The very name Restless Legs Syndrome makes many people snicker, says Ann Battenfield, who says she has lost work and one relationship because of the syndrome.

"You hear, so what, so your legs are a little fidgety, so what?" says the 45-year-old Chicago resident. While Restless Legs Syndrome, or RLS, is far from a household name, neurologists estimate that 7% to 10% of Americans and Europeans have some form of RLS, and that 2.7% to 3% have severe symptoms.

Of late, RLS has been getting more serious attention.

In April, scientists at the University of Montreal identified a cluster of genes that they believe is responsible for passing on the disorder from generation to generation.

The researchers reported their findings in the Archives of Neurology after studying 19 French-Canadian families whose members had a tendency to develop RLS.

And this month, the U.S. Food and Drug Administration approved the first drug for the syndrome, a pill called Requip from GlaxoSmithKline PLC. Although the exact cause of RLS is unknown, scientists believe it may be caused by poor transmission in the brain of dopamine, a neurotransmitter responsible for controlling body movement.

Requip is a dopamine agonist that stimulates the brain's dopamine receptors.

A more potent version of the drug was already on the market to treat Parkinson's disease, which is caused by insufficient levels of dopamine in the brain.

The FDA approved Requip for RLS based on three studies involving a total of 930 patients who took either Requip or a placebo for 12 weeks.

In all three studies, Requip produced a significant improvement in motor symptoms, sleep patterns and mood, according to GlaxoSmithKline.

A longer-term 36-week study showed that patients who continued on Requip had a significantly lower relapse rate than those taking the placebo.

Joan Jobbins, a 53-year-old French teacher in New Jersey, has been taking Requip for a little over a year and says it has relieved most of her RLS symptoms.

The illness hit her eight years ago, when what she calls a "very, very deep nervousness in the legs" began keeping her up all night, either pacing or doing leg lifts on the floor.

Ms. Jobbins went to half a dozen doctors before she was diagnosed with RLS. She was then prescribed a series of different drugs -- many of them treatments for Parkinson's disease that doctors would prescribe "off-label" for RLS.

Some provided relief for a while but would then stop working, or would produce side effects such as drowsiness, Ms. Jobbins says.

"This is the longest I've been on a drug without it stopping working, and with there being no side effects," she says of Requip.

Pickett Guthrie, a 65-year-old from Atlanta, says Requip has reduced the frequency and severity of the attacks that she says used to leave her "twisting on the floor." Ms. Guthrie has been taking the drug about a year.

"It's not a magic bullet, but it's a huge improvement in the quality of life," she says.

GlaxoSmithKline declines to forecast potential sales of Requip.

Analysts estimate Requip sales for RLS could reach several hundred million dollars.

Not everyone responds to medication.

Ms. Battenfield of Chicago has tried Requip and other Parkinson's medicines but found them ineffective.

She says some even made her symptoms worse, a side effect that physicians call "augmentation."

In the mid-1990s, Ms. Battenfield's kicking was keeping her partner awake so many nights that he decided to sleep in a separate room.

The problem eventually killed their relationship, she says.

These days, Ms. Battenfield takes Mirapex, a Parkinson's drug from Pfizer Inc. and Boehringer Ingelheim GmbH, not because it helps much but because she fears stopping the drug would make her feel worse.

She and other patients also take iron supplements, which many doctors recommend, as poor iron metabolism in the brain can cause the dopamine abnormalities that appear to cause the disorder.

Many RLS patients use a variety of homegrown treatments to try to treat their symptoms, and swap ideas on RLS Web sites.

They wrap heating pads around their legs in bed, run hot or cold water over their legs and even place bars of soap under their bedsheets according to an old wives' tale, which RLS patients swear helps ease their twitching.

Clete Kushida, a neurologist and director of Stanford University's Center for Human Sleep Research, says one of his patients, a traveling salesman who spent much of his day behind the wheel, would hit his legs with a baseball bat while driving.

Dr. Kushida, who helped conduct the clinical trials for Requip, believes the medicine will prove a better treatment for many patients.

"The bottom line is that it's very effective," he says.