Highlights Among 105 people who attempted to stop taking antipsychotic medication, less than half consulted a doctor in preparation and approximately a third used a gradual withdrawal method. Just over half described successfully stopping and half reported no current use.  Unwanted withdrawal effects were reported by 61.9% of the group and spanned emotional, cognitive, physical, and functional domains. Withdrawing gradually across more than one month showed significant, positive associations with self-described success and no current use. AbstractFew studies explore subjective experiences of attempting to discontinue antipsychotic medication, the withdrawal methods people use, or how their efforts affect their outcomes. People who take antipsychotics for off-label purposes are poorly represented in the literature. This study investigates experiences of attempting to discontinue antipsychotics in a cross-sectional sample and explores potential associations between withdrawal methods, relapse, and success. An anonymous online survey was completed by 105 adults who had taken antipsychotics for any reason and had attempted discontinuation at least once. A mixed methods approach was used to interpret the responses. Just over half (55.2%) described successfully stopping for varying lengths of time. Half (50.5%) reported no current use. People across diagnostic groups reported unwanted withdrawal effects, but these were not universal. Withdrawing gradually across more than one month was positively associated, and relapse was negatively associated with both self-defined successful discontinuation and no current use. Gradual withdrawal was negatively associated with relapse during withdrawal. We conclude it is possible to successfully discontinue antipsychotic medication, relapse during withdrawal presents a major obstacle to successfully stopping AMs, and people who withdraw gradually across more than one month may be more likely to stop and to avoid relapse during withdrawal.

Findings cannot be readily generalised due to sampling constraints, but results suggest a wide range of supports and coping strategies may be used when attempting to discontinue antipsychotics. Many people may attempt to discontinue antipsychotics without any support. Those who have support for their attempts may be significantly less likely to relapse during withdrawal and more likely to succeed in their attempt. There is a pressing need for further research in this area.

Background: It is well-known that attempting antipsychotic withdrawal can be a fraught process, with a high risk of relapse that often leads people to resume the medication. Nonetheless, there is a group of people who appear to be able to discontinue successfully. Relatively little is known about how people do this. Methods: A convenience sample of adults who had stopped taking antipsychotic medication for more than a year were recruited to participate in semi-structured interviews through an anonymous online survey that investigated antipsychotic medication experiences in New Zealand. Thematic analysis explored participant descriptions of their efforts to maintain their wellbeing during and after the withdrawal process. Results: Of the seven women who volunteered to participate, six reported bipolar disorder diagnoses and one reported diagnoses of obsessive compulsive disorder and depression. The women reported successfully discontinuing antipsychotics for 1.25–25 years; six followed a gradual withdrawal method and had support to prepare for and manage this. Participants defined wellbeing in terms of their ability to manage the impact of any difficulties faced rather than their ability to prevent them entirely, and saw this as something that evolved over time. They described managing the process and maintaining their wellbeing afterwards by ‘understanding myself and my needs’, ‘finding what works for me’ and ‘connecting with support’. Sub-themes expand on the way in which they did this. For example, ‘finding what works for me’ included using a tool-box of strategies to flexibly meet their needs, practicing acceptance, drawing on persistence and curiosity and creating positive life experiences. Conclusion: This is a small, qualitative study and results should be interpreted with caution. This sample shows it is possible for people who experience mania and psychosis to successfully discontinue antipsychotics and safely manage the impact of any symptoms that emerge as a result of the withdrawal process or other life stressors that arise afterwards. Findings suggest internal resources and systemic factors play a role in the outcomes observed among people who attempt to stop taking antipsychotics and a preoccupation with avoiding relapse may be counterproductive to these efforts. Professionals can play a valuable role in facilitating change.

No abstract