The main treatment for people suffering from the painful restless legs syndrome could make symptoms permanently worse, campaigners warn.
The disease, which affects up to 10 percent of the population and is more common in women, causes an unpleasant tingling sensation in the legs, especially at night, and an almost irresistible urge to move.
For those most affected, it can disrupt sleep, damage mental health, ruin relationships and careers. But drugs called dopamine agonists, which are often prescribed by doctors to ease symptoms, can actually exacerbate problems in up to half of patients, studies have found. In some cases, the effects cannot be reversed.
The charity RLS-UK, which describes the situation as “an appalling medical scandal”, says many people have been left with unbearable symptoms even after their medication dosage was increased to the maximum level to end their suffering.
Others develop strange addictive behaviors, such as gambling or compulsive shopping, he says.
In one shocking example, Joeli Brearley (pictured), 45, became suicidal after being forced to repeatedly increase her dose of a dopamine agonist called ropinirole, which made her symptoms worse and left her unable to sleep for days.
Ms Brearley, a mother of two from York, who launched campaign group Pregnant Then Screwed fighting for mothers’ rights in the workplace, first sought help from her GP three years ago after her restless legs symptoms worsened following two pregnancies.
In one shocking example, Joeli Brearley, 45, became suicidal after being forced to repeatedly increase her dose of a dopamine agonist called ropinirole, which made her symptoms worse and left her unable to sleep for days.
Ms Brearley, a mother of two from York, who launched campaign group Pregnant Then Screwed fighting for mothers’ rights in the workplace, first sought help from her GP three years ago after her restless legs symptoms worsened following two pregnancies.
“At first it was a miracle cure,” she says. “Before, I had to run in place watching TV in the evenings and I would often get up to pace back and forth or do squats in the middle of the night because that tingling sensation in my legs kept me from sleeping. After taking ropinirole, the symptoms disappeared and I started sleeping like a baby. It was amazing. But they slowly started coming back and my GP kept advising me to increase the dose.
“By the end, I was on the maximum dose and it was like I wasn’t taking it at all. It was horrible, I couldn’t sleep and I was desperate. It was a mess.” So she decided to stop taking the drugs cold turkey, but her symptoms quickly worsened. She felt like her knees were being stabbed repeatedly and she would get up every few minutes to pace back and forth. She was sleeping so little that she began hallucinating and having intrusive thoughts.
At first, the drug was a “miracle cure,” but soon, Ms. Brearley said, she had difficulty sleeping while taking the medication.
“It was torture,” she recalls. “My partner would find me lying on the floor, sobbing. I would pull knives out of drawers and think about stabbing myself in the legs. I would think about taking an overdose just to get it over with. I was on the verge of doing something bad. But when I called my GP to say I didn’t think I could survive, they told me to go back on the drugs.”
Although the cause of restless legs syndrome is unclear, it is thought to be related to a malfunction in the brain’s transport of a chemical called dopamine, which helps control muscle movement.
Low levels of iron, which is involved in the creation of dopamine, may be a factor in why one in four women develops restless legs syndrome during pregnancy. In fact, people with restless legs syndrome may need higher levels of iron in their bodies than others, experts say.
Dopamine agonists work by “tricking” the brain into thinking it is getting the dopamine it needs. They are also prescribed to control the symptoms of Parkinson’s disease.
According to a survey of more than 3,000 people with RLS-UK, 65 percent of those who had taken dopamine agonists changed their medication because their symptoms worsened. This worsening is known as “augmentation.”
Ms Brearley, who takes codeine to control her symptoms, paid £600 for an iron infusion at a private clinic earlier this month, although it is too early to say what difference it has made.
Dr Julian Spinks, a GP in Kent and RLS-UK trustee, said: “Dopamine agonists are absolutely brilliant at treating the condition initially, but they seem to be particularly associated with escalation. Most doctors don’t understand that by increasing the dose they are fuelling this process.
‘Addressing it often means going off the medication, which involves some degree of withdrawal and much worse restless legs syndrome symptoms.’
The American Academy of Sleep Medicine is preparing to update its guidelines to no longer recommend dopamine agonists for restless legs syndrome (RLS).
Other treatments for restless legs syndrome include the anti-epilepsy drugs gabapentin and pregabalin, but these usually do not work if given after dopamine agonists, the charity says.
Ms Brearley, who is taking codeine to control her symptoms, paid £600 for an iron infusion at a private clinic earlier this month, although it is too early to say what difference it has made.
Julie Gould, from RLS-UK, said: “We want GPs to be better trained to understand restless legs syndrome and the problems associated with dopamine agonists and for much more research to be carried out into the condition.”
