McPin Public Involvement in Research Manager Annie shares her story of antipsychotic medication and weight gain as the RESOLVE study draws to a close.
Content warning: mention of specific psychotic experiences, disordered eating/exercise behaviours and numbers around weight.
Annie Walsh
Antipsychotic medications are typically used in the treatment of severe mental illness (SMI), including psychosis, bipolar and major depression.
Back in 2016, I went into a major depressive episode where I started having unusual thoughts, or “psychotic experiences”.
I started to believe people had planted bombs in their bins and had to zig-zag across the road up to work to avoid them. I would walk into a shopping centre or sit down to dinner with friends and be so overcome with paranoia and violent thoughts I’d spiral into a panic and have to leave.
I was in IAPTs, now known as Talking Therapies, at the time and finally brought it up due to the clear impact on functioning it was starting to have on me, but was met with a sense of panic and indecision on where to refer me.
I was unfortunately discharged back to my GP, who prescribed the antipsychotic quetiapine as an adjunctive treatment to other medications I was already on.
And wow did quetiapine work! My thoughts quietened and eventually stopped, but, other than the standard information leaflet included in any box of medication, I was told nothing about its side effects.
Antipsychotics, weight gain and physical health
Antipsychotics are associated with rapid weight gain [1] and cardiometabolic factors that contribute to the risk of long-term physical health conditions and reduced life expectancy.
Antipsychotics promote weight gain primarily by increasing appetite, causing fatigue and thereby decreasing physical activity levels. They can even alter the gut microbiome [2], with most antipsychotics leading to a more than 7% increase in body weight within a year, in over half of people starting treatment [3].
In reality, and over a longer period of time, weight gain can be even greater than this, particularly if someone also has negative body image and pre-existing disorder eating behaviours (e.g. food craving/addiction, binge-restrict cycles, night eating, safe foods), which are more common in people with SMI than the general population [4].
Before I knew it, I was craving pastries, stuffing down one after another before heading to the gym to try and burn off the calories.
This became an awful cycle further contributing to mental health issues, including eventual addiction to codeine to be able to do more and more at the gym – but that’s another story for another day.
In just a year, I had gone from 70 kg to 95 kg, eventually reaching 129 kg at my highest. As a result, I also developed high blood pressure and early-stage chronic kidney disease.
The issue is even worse when people are going through this process in a hospital environment before being discharged to community care, where the focus is often only on mental health; weight gain is seen as inevitable, and responsibility is passed between secondary and primary care and the individual.
Of course, this is only my lived experience, one voice, but there is a clear lived experience priority to address the rapid weight gain when taking antipsychotics.
Research on mental and metabolic health
Something clearly needs to change, but there is hope in increasing research on the interface between mental and metabolic health and the management of both [5-9].
For example, the RESOLVE study, led by Aston University, funded by NIHR and partnered with McPin, conducted a realist synthesis of measures not involving taking medication to manage antipsychotic-related weight gain in people with SMI [10].
A realist approach aims to answer the question of what works, for whom, in what contexts and why. This involves repeatedly going back and forth between searching existing literature and discussions with relevant people, such as health care professionals and those with lived experience, to construct and gradually refine a theory.
Now that the theory has been developed, it can then be tested and further refined through future research, and be used to develop recommendations for how antipsychotic-related weight gain can be best managed in people with SMI.
Lived experience involvement is a key part of the realist approach, ensuring the RESOLVE study remains grounded and relevant to real-world experience, and was led by Annie and Alex from McPin. The study is now coming to an end but, armed with the results, the team are now bringing researchers, NHS Trusts and practitioners, dieticians, peer supporters and people with lived experience together at Aston University.
The aim will be to see what weight management pathways are out there already, what can be adapted, what is missing and what support would be needed to fill the gaps.
The team will then use this to finalise recommendations for the development of antipsychotic weight management pathways that are both acceptable to people with lived experience and feasible for practitioners to implement.
Being part of the RESOLVE study has empowered me to advocate for myself and speak to my GP, leading to correct diagnosis and medication for my mental health, a 12-week weight management course and prescription of a diabetes/weight loss medication. I’m very pleased to say I am already over 15 kg down with my mental health as stable as it has ever been.
It has also reassured me that my experience was not my fault and filled me with hope from the number of people I have met passionate about this issue who are now coming together in force and building momentum in the field of metabolic psychiatry.
Read more about the RESOLVE study on our project page, and find out more about getting involved in research here.
You can also read blogs from RESOLVE LEG members Justine, Ian and Julian here:
References / Further Reading:
[1] Pillinger T, McCutcheon RA, Vano L, et al. Comparative effects of 18 antipsychotics on metabolic function in patients with schizophrenia, predictors of metabolic dysregulation, and association with psychopathology: a systematic review and network meta-analysis. The Lancet Psychiatry. 2020;7(1):64-77. doi:10.1016/S2215-0366(19)30416-X
[2] Holt RIG, Hind D, Gossage-Worrall R, et al. Structured lifestyle education for people with schizophrenia, schizoaffective disorder and first-episode psychosis (STEPWISE): randomised controlled trial. The British Journal of Psychiatry. 2019;214(2):63-73. doi:10.1192/bjp.2018.167
[3] Kahn RS, Fleischhacker WW, Boter H, et al. Effectiveness of antipsychotic drugs in first-episode schizophrenia and schizophreniform disorder: an open randomised clinical trial. The Lancet. 2008;371(9618):1085-1097. doi:10.1016/S0140-6736(08)60486-9
[4] Sankaranarayanan A, Johnson K, Mammen SJ, et al. Disordered Eating among People with Schizophrenia Spectrum Disorders: A Systematic Review. Nutrients. 2021;13(11).
[5] https://mcpin.org/project/resolve/
[6] https://mcpin.org/project/hub-for-metabolic-psychiatry/
[7] https://mcpin.org/project/the-psychosis-metabolic-risk-calculator-project/
[8] PEGASUS https://www.citystgeorges.ac.uk/news-and-events/news/2023/06/lessening-risk-of-cardiovascular-disease-people-severe-mental-illness
[9] https://www.nihr.ac.uk/23169-metformin-prevent-antipsychotic-induced-weight-gain
[10] Maidment ID, Wong G, Duddy C, et al. REalist Synthesis Of non-pharmacologicaL interVEntions for antipsychotic-induced weight gain (RESOLVE) in people living with severe mental illness (SMI). Systematic Reviews. 2022/03/09 2022;11(1):42. doi:10.1186/s13643-022-01912-9