Service-user efforts to maintain their wellbeing during and after successful withdrawal from antipsychotic medication

Abstract

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.

Opinion Piece: The case for establishing a minimal medication alternative for psychosis and schizophrenia

“…Clinicians are often reluctant to reduce or stop antipsychotics due to lack of guidelines, concerns about relapse, and service-level barriers, such as pressure to rapidly discharge and lack of resources to support reduction (Cooper et al, 2019;Moncrieff et al, 2020). With no formal alternative approaches, for some people treatment "choice" can often be reduced to which antipsychotic they want to take and people have reported that they do not feel involved in medication decisions, often feel coerced, and would like to have more choice over their treatment including more support with reducing/stopping these drugs (Larsen-Barr & Seymour, 2021;Morant et al, 2016;Morrison et al, 2012;Read & Sacia, 2020;Roe et al, 2009). As a result, people will often stop antipsychotics abruptly, without clinical support, which may be more likely to lead to adverse outcomes (Horowitz et al, 2021).…”

“…Although randomised controlled trials show increased rates of relapse following antipsychotic discontinuation over the short-term, not everyone relapses, and relapse does not necessarily indicate a poor long-term outcome. Furthermore, some service users may not prioritise symptom reduction and relapse avoidance to the same extent as services/clinicians (Larsen- Barr & Seymour, 2021). The process of reducing or stopping antipsychotics may itself increase the risk of relapse above that of any concurrent mental health condition due to antipsychotic-withdrawal related effects.…”

“…Tapering strips could be used to reduce, although these are only available in certain countries (Groot & van Os, 2020). People may require more intensive monitoring and support during the reduction and for a time after they have stopped (Horowitz et al, 2021;Larsen-Barr & Seymour, 2021). For some people, reducing to the lowest possible dose may be more plausible than stopping, and some may find intermittent antipsychotic use during symptom exacerbations to be helpful.…”

“I found hundreds of other people…but I still wasn’t believed” – An exploratory study on lived experiences of antipsychotic withdrawal

“…Currently, there is a lack of acknowledgement in clinical guidelines on the extent that antipsychotics can induce these effects . Reported antipsychotic withdrawal effects include insomnia, gastrointestinal disturbances, sweating, tremors, dyskinesia, and anxiety (Brandt et al, 2020;Larsen-Barr & Seymour, 2021). No consensus exists over whether withdrawal effects are iatrogenic (Chouinard et al, 2017;Moncrieff, 2006), or whether the experiences are a relapse of a prior diagnosis (Emsley et al, 2018).…”

“…Gathering the diversity of experiences of people, who have been through antipsychotic withdrawal, facilitates a better understanding of the potential difficulties. A qualitative study reported frequent experiences of insomnia and anxiety secondary to discontinuation, and symptoms of psychosis and mania (Larsen-Barr & Seymour, 2021). Moreover, 65% of participants in an online survey (n = 650) experienced withdrawal effects (Read & Sacia, 2020).…”