Case studies reveal patient empowerment through tapering antipsychotics

A new study from Copenhagen University Hospital offers a rare insight into the personal experiences of six people as they navigate the complex process of tapering off their antipsychotic medication. Research reveals not only varied outcomes ranging from complete cessation to ongoing treatment, but also underscores a profound increase in personal empowerment and emotional insight independent of decline outcomes.

The study followed six people who were trying to stop using antipsychotics. Two of them managed to stop the medication completely, while two others experienced a worsening of their psychotic symptoms in the process. One person was able to reduce their dose significantly and the last one is still in the process of reducing the medication. The study, led by Sofie Norlin Mlgaard of Copenhagen University Hospital, presented these 6 cases to highlight the diverse experiences of individuals trying to reduce and discontinue antipsychotic medication.

The authors write:

“Some patients with schizophrenia may be overmedicated, leading to unwanted side effects and a desire to reduce their medication. The patients in our study illustrate how guided tapering of antipsychotic medication done in conjunction with the patient can lead to a better emotional awareness and the development of effective symptom management strategies This can in turn lead to a greater sense of empowerment and identity and give more meaning to life, supporting the personal recovery experience.

This study, published in BMC Psychiatry, examines techniques used in the clinic to help patients during decline. Patient journeys are unique and research shows their individual paths. While not all patients are completely successful in discontinuing their medication, the process itself helps significantly improve their sense of independence and overall recovery.

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The present research aimed to present the diversity of the service user’s experience of careful and closely controlled tapering of antipsychotics. To achieve this goal, the researchers present 6 case studies from a clinic in Denmark specializing in tapering antipsychotics.

To be treated at the clinic, service users must be between 18 and 64 years of age and have a diagnosis of schizophrenia, according to the International Classification of Mental and Behavioral Disorders 10th edition. In addition, service users must agree to take their prescribed antipsychotics and adhere strictly to the clinic’s tapering programme. Service users must also be available to speak weekly on the phone and attend monthly appointments.

Exclusion criteria include psychiatric hospitalization in the past six months, substance abuse that may limit the service user’s ability to attend appointments, and a high risk of suicide or violence. Service users may also be excluded from clinic services if a psychiatrist concludes that the decline may be dangerous.

Each user of the clinic’s service is assessed monthly using the Positive and Negative Syndrome Scale (PANSS), an assessment tool that measures the severity of schizophrenic symptoms. The dose of antipsychotics is reduced by 10% each month. Once half of the initial dose has been reached, the taper tapers off to a 5% reduction each month. In consultation with the clinic staff, the service user decides when to stop tapering. The clinic continues to observe the service user for six months after the user decides to stop tapering or reaches discontinuation.

Service user A had received the long-acting injectable (LAI) form of aripiprazole for several years. When she arrived at the clinic, she was prescribed 400 mg/month and had an initial PANSS score of 70. After 12 months of careful tapering, she was able to completely discontinue her antipsychotic use. At the end of the clinic’s 6-month post-discontinuation observation period, service user A had a PANSS score of 38. After 12 months off antipsychotics, service user A has not reported no psychotic symptoms.

Service user B had been taking antipsychotics for over ten years. When he first came to the clinic, service user B was taking 300 mg/month aripiprazole LAI. His initial PANSS score was 66. After ten months of careful tapering, service user B took his last 80 mg aripiprazole LAI and his PANSS score had reduced to 52. After 14 months off antipsychotics, service user B reported no psychotics. symptoms

Service user C had been taking antipsychotics for several years. When she came to the clinic, she had been taking 20 mg/day of aripiprazole for the past year and had an initial PANSS score of 40. After six months, she had reduced the dose to 5 mg/day and decided to stop decrease there. Four years after the service decline, User C still hears a supportive voice in his head, but this does not cause him any distress or distress, and he does not experience any other psychotic symptoms.

Service user C reported that reducing her dose made her more emotionally available and she felt “in charge of his own life.“

Service user D was taking 10 mg/day of aripiprazole and had an initial PANSS score of 34 when he first arrived at the clinic. After receiving clinic services, service user D revealed that he had not been taking his medication regularly. He was then switched to 200 mg/month aripiprazole LAI. After four months, her dose was reduced to 120 mg/month. Service user D began to experience an increase in psychotic symptoms, including auditory and visual hallucinations, and his PANSS score increased to 40. He also had to take sick leave from work. The clinic then adjusted her dose to 300 mg/month. After two months, her PANSS score had dropped to 31 and she was able to return to work. Although he was unable to discontinue his use of antipsychotics, service user D reports: “I think the time at the clinic has been good. I’m sad that I can’t go without medication, but now I know that medication is important to me.“

Service user E was taking aripiprazole LAI 200 mg every 5 weeks and had an initial PANSS score of 59 when he came to the clinic. Clinic staff changed her dose of aripiprazole to 160 mg/month. After two months of reduced service, User E’s PANSS score increased to 62. She reported feeling watched and fearful of others. Two weeks later, service user E experienced an increase in psychotic symptoms, including intrusive thoughts, derealization and persecutory delusions. His PANSS score increased to 67, and the clinic staff increased his antipsychotic dose to 300 mg/month with an additional 5 mg/day. Service user E was subsequently hospitalized for 11 days as a result of his psychotic symptoms. She stabilized two months later and her PANSS score improved to 48.

Service user F had been treated with multiple antipsychotics as well as electroconvulsive therapy for persistent and treatment-resistant delusions of clairvoyance and telepathy. When service user F came to the clinic, he was taking 175 mg/day clozapine and 250 mg/day amisulpride. He had an initial PANSS score of 85. After 16 months, service user F has reduced his clozapine consumption to 12.5 mg/day. He has experienced no increase in psychotic symptoms and has the same level of function as when he first came to the clinic. Service user F is still tapering and plans to discontinue clozapine for the next four months.

The authors state that while tapering off antipsychotics may carry some risks:

“Determining whether the current antipsychotic dose is still necessary can only be determined by reducing the dose, and since most side effects are dose-dependent, treatment with the lowest effective dose is of crucial importance.”

The authors report that although not all service users are successful in their attempts to reduce and/or discontinue antipsychotic use, their discontinuation attempts and support from clinic staff give users of the service a sense of autonomy and empowerment. Four of the six service users included in the current work reported an increase in emotional awareness, leading to better stress management strategies and an increased sense of recovery.

The authors acknowledge an important limitation of the current research. The 6 cases presented in the current work were chosen to demonstrate the diversity of tapering experiences and are not qualitatively representative of the service user experience of antipsychotics. This means that the results are not generalizable to any population.

Discontinuing antipsychotics is difficult because of the withdrawal symptoms that often accompany the process, especially if careful tapering is not observed. Previous research has found that success in antipsychotic discontinuation depends on multiple factors, including internal resources, systemic factors, and access to support figures such as medical professionals and friends/family. Numerous studies have found that slow tapering is the best strategy for mitigating the adverse effects of withdrawal, such as psychotic symptoms. These psychotic withdrawal symptoms are often mistaken for a return of the initial psychosis, although this is less likely when a slow and careful taper is observed.

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Mlgaard, SN et. at the. (2024). Clinical experiences of guided tapering of antipsychotics for patients with schizophrenia a case series. BMC Psychiatry 240. (Link)