There’s never really an ideal time to quit your anti-psychotic medications, says Harry, who stopped taking a drug called Seroquel daily in January of 2016. By that time, he’d been on Seroquel for bipolar disorder for more than a decade. He had once been on other anti-psychotics, mood stabilizers, and anti-depressants. Yet, for the past “couple of years,” he says he had been considering coming off of Seroquel because he was doing well on a low, once-nightly dose and he didn’t like that the medication made him feel sedated. He thought at first he would wait until he was done with graduate school and his kids were older. Then, his wife had to stay in the hospital for three days after delivering their second son. Harry—who asked to remain anonymous, fearing discrimination at work—was left in charge of their older kid. He didn’t take any Seroquel during that time because he wanted to be alert for his child.
Afterward, he called his psychiatrist. “I was like: ‘You know, I haven’t taken medication this weekend. What do you think of that?’ He was like, ‘OK.’ He didn’t say, ‘You should start it again,'” Harry reports. The two had discussed stepping Harry down from Seroquel before. The next time they met, Harry, himself a mental-health clinician, outlined his plan to his doctor, whom he says gave him the thumbs-up. Harry now keeps Seroquel on hand for when he thinks he might have a manic episode, but is otherwise drug-free.
It’s not known exactly how many Americans with major mental illnesses stop taking their medications, but it’s generally thought to be a lot. Studies, such as this 2007–08 survey of adults with schizophrenia, find rates of what doctors call “non-adherence” on the order of 60 percent. A quick search shows that most studies of non-adherence focus on how best to avoid it, but one new study takes a different tack. A team of five researchers, some of whom have been prescribed psychiatric medications themselves, took it as a given that people might want to quit their meds. So they surveyed recent quitters to learn more about their experiences. The goal was to come up with information doctors could use to support their patients during the quitting process.
“This is something people choose, and we don’t know enough about it to help people,” says Laysha Ostrow, chief executive officer of a mental-health consultancy in California and a public-health researcher who worked on the study. “I feel that it’s important to bring those ideas into more of a mainstream conversation, given how many people decide to discontinue. It shouldn’t be this subversive thing that we don’t talk about in the health-care system or in research.”
“It’s quite rare to see a paper like this, which is led so much by service users and their priorities and that’s got some real strengths,” says Sarah Chapman, a researcher who studies non-adherence at the University of Bath. Chapman was not involved in the study.
Ostrow and her colleagues surveyed 250 adults who have been diagnosed with schizophrenia, psychosis, bipolar disorder, or depression, and have tried to quit one or two medicines in the past five years. The survey wasn’t weighted to represent the demographics of the United States generally, so its respondents skewed white and well-educated. Still, it provides insights into the experiences of many, Ostrow says. Among the survey’s results: The majority of respondents quit their medicines with the support of their doctors, yet most didn’t rate their doctors as helpful during the process. About three out of four respondents wanted to quit because they didn’t like their medication’s side effects. A little more than half of the survey-takers said they ran into severe withdrawal symptoms while quitting.
For Ostrow, these results suggest lessons for both doctors and folks who are prescribed these medicines. There’s not enough research yet for doctors to make “formal recommendations” to patients who want to stop taking psychiatric drugs, but: “I think that being available to support people’s choices is important, understanding there’s a lot of different strategies that people might use.” Strategies for dealing with withdrawal that the majority of Ostrow’s survey respondents found helpful included independently researching their symptoms by reading books or online resources, talking with family and friends, and spending time outdoors.
As for those wanting to quit, Ostrow has an encouraging message: “There are other people out there who have the same goals and succeeded.”
Chapman noticed how 27 percent of survey-takers quit their drugs without telling their prescriber, quit and then stopped seeing their prescriber, or went to a new prescriber upon quitting. Considering their diagnoses, many of the folks in the survey were likely experiencing severe symptoms before they got treatment, Chapman says. “You really would hope people would talk to their prescriber about it.” A prescriber can tell people what to expect in withdrawal, and help plan other treatments, such as psychotherapy.
Harry says his own doctor was supportive, but didn’t offer him much advice on how to quit Seroquel. Long before his wife’s hospital stay, he had been weaning himself off the medication. After that fateful weekend, he didn’t feel withdrawal symptoms, which he attributes to having already been on a low dose. His psychiatrist helped by identifying the stressors that led Harry to become really energetic, or to lose touch with reality, as Harry puts it.
In March, Harry had an episode during which he had paranoid thoughts again. It scared his wife. He took Seroquel again temporarily. “That was just a reminder I have to be careful,” he says. “I’m not cured or anything like that.” Still, he says, not taking Seroquel every day anymore gives him a sense of hope: “Like I don’t have to be stuck with this forever.”