More than 250 people in the UK develop gambling and sex addictions due to medication.

Patients using dopamine agonists, medications prescribed for movement disorders, have developed addictions to gambling, sex, and shopping. More than 250 people in the UK have contacted the BBC to report these compulsive behaviors. Those affected include a police officer, nurses, doctors, and a bank risk manager, none of whom had a prior history of this type of conduct.

Emma, ​​one of those affected, began gambling compulsively and buying unnecessary things after being prescribed Ropinirole, a drug manufactured by the British pharmaceutical company GSK. She first developed Restless Legs Syndrome (RLS) during her pregnancy. After her symptoms worsened in the following years, she was prescribed the medication.

Over the past year, Emma has lost tens of thousands of pounds gambling. She reports feeling as if something was controlling her during these episodes. “It ruined my life—we’re going to be in debt for God knows how long to pay it off,” Emma says about the consequences of her gambling addiction. According to BBC News Brazil , similar cases have been documented in several countries, revealing a worrying pattern of side effects not adequately communicated to patients.

Emma's husband researched the medications she was taking and found a BBC report on the subject. "I read it and thought, 'My God, that's me,'" says Emma.

Doctors do not warn about side effects.

Emma filled out an online form at her primary care clinic listing all the medications she was taking and reported that she had developed a gambling addiction. Despite mentioning she was taking Ropinirole, Emma says her doctor never linked her behavior to the known side effects of the medication.

Almost a year after the BBC first reported on the devastating consequences of these impulsive behaviors, many patients say that doctors still fail to adequately warn them about the side effects of dopamine agonists.

The drug works by increasing dopamine activity in the body. Dopamine is a chemical that helps regulate movement, but it also plays a central role in motivation and the reward system, which can be overstimulated by these medications. These drugs are part of a family of drugs developed by GSK and two other manufacturers in the United Kingdom.

Prevalence of side effects

About one in six Parkinson's patients using these medications is affected by some type of impulsive behavior, according to a 2010 study of just over 3.000 people. Given this prevalence, side effects would be classified as "very common."

The package inserts do not report this prevalence. The documents have been repeatedly criticized for describing impulsive behaviors in a generic way, without detailing specific actions they can lead to, such as pornography addiction.

Despite these medications recently being downgraded as a first-line treatment for Restless Legs Syndrome (RLS), there has been no impact on prescribing levels by general practitioners in England. The medications were prescribed 1,5 million times by general practitioners in England alone last year, demonstrating the extent of the problem.

Reports of various compulsive behaviors

People across the UK have reported to the BBC how side effects related to impulsive behavior have led to enormous debt, broken marriages, involvement in crime, and suicide.

There are reports of patients who have developed compulsive eating habits, cross-dressing , and making reckless investments. Others have sought homosexual relationships for the first time.

Another recurring theme is that of older women reporting that their husbands, after decades of marriage, have become sexually coercive.

Michael, whose name has been changed, recently began seeking out sex workers after being prescribed these medications for Restless Legs Syndrome. "I think I'm obsessed with sex," he says, adding that he has already had relationships with about 20 men and women, despite being married.

Before treatment, Michael claims he never cheated on his wife nor had homosexual encounters. He says he initially enjoyed the compulsion, but now feels trapped.

Michael claims he is unable to tell the doctor, or even his wife, who also attends the appointments. "I know I need help, but the people who can help me, I can't find," he says. "I have nowhere to go."

Suicides within families following impulsive behavior.

The BBC published, last week, the story of a family in which a father and son took their own lives. The father's impulsive behavior led him to steal more than R$4 million from his clients to pay for sex and antiques.

Andrew, a lawyer who held power of attorney for many elderly people with dementia, had been diagnosed with Parkinson's disease a few years earlier and began taking Pramipexole, a medication that is also sold in Brazil. The effects were initially "miraculous," according to his ex-wife Frances, and the tremor caused by Parkinson's decreased dramatically.

However, Andrew stole money from 13 of his clients, eleven of whom were over 80 years old and some were ill. He spent over £100 (approximately R$711) on a single webcam and sex chat site, using his clients' money. He also spent almost £80 (approximately R$569) on sex workers in just four months, and when he was arrested, his cell phone contained the numbers of 90 different escorts.

Andrew also began compulsively buying antique pens, ceramics, and cricket memorabilia, spending £85 (R$604) on eBay in the six months leading up to the police raid.

It was only in the emergency room, after Andrew fainted at home, that a doctor asked Frances if she knew that Pramipexole could cause a range of impulsive behaviors. Frances says it was a "terrible shock" and that she couldn't understand why she had never been warned, despite having accompanied Andrew to all his appointments.

In 2015, in court, Andrew pleaded guilty to fraud. During sentencing, the judge said he believed Andrew's behavior was caused by the drugs he was taking, but argued that he was a lawyer and was still capable of conducting his business competently in other ways. Andrew was sentenced to four years in Manchester prison, known as Strangeways.

The mental health of the couple's son, Harry, who had mental health problems, deteriorated so much after his father's arrest that he was involuntarily committed to a psychiatric hospital. He returned home and then disappeared. Weeks later, his body was found. He had committed suicide.

Andrew stopped taking the medication immediately after discovering its side effects, but his Parkinson's symptoms worsened. “I think his whole life was completely destroyed,” says his daughter Alice. “Yes, because of Parkinson's, but mainly because of the medication.” In October 2020, Andrew committed suicide.

Since then, more men have come forward saying they recognize the described behavior as their own. They claim they are currently experiencing this type of hypersexuality.

In general, neither the users nor their families realized that the compulsive behaviors could be caused by the medication. Organizations such as Parkinson's UK and RLS-UK can offer support.

The guidance from the NHS, the UK's National Health Service, is clear: if you are taking these medications and have any concerns, you should see a doctor.

GSK became aware of a case of pedophilia in 2000.

In 2000, the pharmaceutical company GSK became aware of a case of pedophilia linked to its medication. A 63-year-old man who was using Ropinirole sexually abused a seven-year-old girl and was arrested.

The case was included in a 2003 report on safety concerns. The document described a link between Ropinirole and "deviant" sexual behavior.

GSK shared the 2003 report with the British medicines regulator the following year. The pharmaceutical company claims it had informed the agency about the pedophilia case within days.

Specific language regarding "deviations" never appeared in the warnings. Instead, they mention the possibility of "increased libido," "harmful behavior," and "altered sexual interest." It has been more than 20 years since these medications were found to cause impulsive behavior, but the package inserts still do not specify how frequently these disorders may occur.

During the same period in which GSK was compiling its findings on deviant sexual behavior, the company was requesting authorization to use Ropinirole for another condition, Restless Legs Syndrome.

The company collaborated with a private hospital in the United States to test whether the drug was effective in treating sexual dysfunction in 2005. GSK stated that it neither sponsored nor designed the 2005 study.

Position of the regulatory agency

The UK's Medicines and Healthcare products Regulatory Agency (MHRA) stated in a note that the warnings only appeared in 2007 because such a decision requires the analysis of all available evidence. The agency further stated that package inserts cannot include an "exhaustive" list of behaviors, as many are "individualized." These sexual behaviors are "individualized," the agency says, and therefore it is not possible to include an "exhaustive list" in the information leaflets.

Previously, the agency had told the BBC that it does not list the frequency of impulse control disorders because many people do not report them. Andrew's death is not listed in the UK's Yellow Card public register , the Medicines and Healthcare products Regulatory Agency's system that compiles reports of adverse drug effects. Nor will it include the case of his son, Harry.

Last week, Layla Moran, chair of the House of Commons Health Committee, called on the UK's medicines regulator to review warnings about these side effects. "It's not just a side effect affecting the individual. It's affecting families and communities and creating new victims," ​​she said.

“What does ‘impulsive behavior’ mean, and how likely are patients to develop it? Currently, patients don’t have this information, and without it, how can they be expected to mitigate this behavior?” he asks. Moran states that the Yellow Card program “is not adequate” for reporting side effects that people consider shameful.

The government has described the BBC's latest findings as "extremely worrying." However, the regulatory agency has stated that there are no plans to change the warnings.

GSK told the BBC that the drug has been extensively tested and remains approved by regulators worldwide. The company claims that the side effects are clearly described. GSK stated that its drug has been extensively tested, approved by regulatory bodies worldwide, and prescribed for more than 17 million treatments. The company said it has shared its report on safety concerns with regulatory bodies.

The medication prescribed to lawyer Andrew, pramipexole, is manufactured by Boehringer Ingelheim. The company has not commented.

Legal proceedings in Europe

Pharmaceutical company GSK is facing lawsuits in Europe related to Ropinirole. Next month, a major decision is expected in a French court after a man in his 50s sued GSK for failing to adequately warn patients about these side effects.

He claims the medication destroyed his relationship with his partner and that he lost 90 euros (approximately R$ 552) to gambling and compulsive spending. The man is seeking compensation and demanding that the company acknowledge its responsibility.

A year ago, a Belgian court acquitted a man who had sexually abused his four-year-old granddaughter, arguing that Ropinirole caused his pedophilic behavior.

Several patients who contacted the BBC reported feeling they lack access to justice for side effects about which they claim they were not properly warned. The harm caused by dopamine agonist medications to other families has also gone unreported. Some said they lost their life savings or even their homes due to gambling addiction or compulsive shopping.

Many also said they were left without means of seeking justice for their losses due to the challenges of increasing class action lawsuits in the UK and the difficulties in meeting the requirements of a medical malpractice case, where they would have to prove they were not warned.

In 2017, doctors were required to provide Parkinson's patients and their families with verbal and written information about the risk of impulsive behaviors and to regularly monitor their development, in accordance with guidelines from the National Institute for Health and Care Excellence.

But the report heard from many Parkinson's patients who received prescriptions for the medications since the introduction of these guidelines that they were not properly warned about the risks. Some say they currently suffer from impulsive behaviors.

Alice and Frances moved hundreds of miles away from the village where they lived, but the pain remains with them. “My life was taken from me: my home, the community I lived in, but above all, my son,” says Frances. “I simply don’t have words to describe how devastating this is.”