Drug talk

ABC News is reporting there is an Australia-wide shortage of a drug used to treat psychotic illness, known as Seroquel (generic name quetiapine).

The article describes it being used for schizophrenia but it is also widely used for bipolar disorder and I have taken it for bipolar type 2 as a mood stabiliser and to facilitate sleep — some other functions beyond its antipsychotic effect.

For a long time it was also used, not without controversy, to help manage the ‘sundowner’ aggression that emerges in some patients with dementia, until a study showed this was associated with increased mortality risk. The controversy surrounded concerns with the very widespread use of ‘chemical sedation’ in populations where behaviour management could be effective.

The article notes that when a psychiatric medication is unavailable, it is not a simple matter of ‘swapping in’ another medication in its place, because they all have subtly and sometimes markedly different mechanisms of action — the changes they induce in brain function that appear to alleviate symptoms.

Patients switching medications may need to undergo a ‘washout’ period where you are tapering off one drug and losing its protective benefits but the new drug isn’t fully active in your brain yet, and this time can be very disruptive to your mood, perceptions, emotions and general mental health.

In this piece I want to share some reflections on the process for switching medications, based on my experience switching from Seroquel, the drug implicated in the shortage, to aripiprazole (brand name Abilify). I’ll start with some practical suggestions and conclude with a quick reflection on the ‘drug talk’ that is often discouraged in mental health care and support settings.

Considerations for making the switch

I want to share a personal perspective in case you ARE on Seroquel and you’re contemplating a change. I switched to a newer antipsychotic that is PBS funded for schizophrenia but not for bipolar (private script $31.60).

Called aripiprazole, it is an interesting drug with a U-shaped effect, i.e. it boosts dopamine sensitivity at low levels of dopamine and tamps it down when levels are getting higher again.

It takes a bit of getting used to, however…

Aripiprazole is notorious for causing problems with sleeping — that’s why I post so much on social media grumbling about sleep meds.

Its effects on sleep are paradoxical: if you take it in the morning you’ll be drowsy, but if you take it at night you may have insomnia (specifically trouble initiating sleep). This is another U-shaped effect and may be directly caused by its mechanism of action, e.g. boosting low arousal (steady on, I’m talking about wakefulness here) and tamping down higher arousal.

It can be distressing and ongoing GP support can help to manage the potential disruption that sleep problems can cause.

Practical tips and notes

If you were switching from Seroquel to aripiprazole, here are some suggestions:

1. Accept that your days of easy sleep are gone and the new regime involves a bit more difficulty ‘drifting off.’

2. Prepare for a little more behavioural activation — a wider emotional range, stronger responses to things.

3. Note that aripiprazole is close to weight-neutral and much less likely to derange your lipids than Seroquel.

4. Ensure your support team know the change in drugs is happening so they are ready in case you need help.

5. Update your safety plan and really think about what it looks like when sleep issues are starting to affect your perceptions, mood and emotions. Advise trusted friends to watch for warning signs emerging and give them an action plan (e.g. ‘tell me directly’ or ‘you can contact my GP’).

6. Talk to other people with mental illness about their medication experiences. It can help you gauge whether any disruption you are experiencing is ‘par for the course’ or worth further clinical investigation and support.

Drug talk — why so problematic?

On pt 6, there are mental health professionals who would scold me for talking about drugs. They often ban patient ‘drug talk’ in support groups and services in order to reserve that privilege for trained clinicians.

I come from the community-based response to HIV where it is abundantly clear that informal conversations about medication can help translate complex health issues into everyday practical and vernacular understandings.

This was a vital process during the Australian response to the HIV epidemic when highly effective treatments first arrived in 1996-7 with a shocking pill burden and a whole roster of side effects that were difficult to manage.

Research by Dr Michael Hurley, then at the University of Technology Sydney, found that creative arts, comedy and drama all contributed to people having informed and engaged conversations about emerging treatments knowledge.

Although I am a trained and experienced health promotion practitioner and I am taking care to talk in general terms, you should be aware this account reflects my own personal (n=1) experience of switching from Seroquel to aripiprazole.

Other people may experience it very differently. Some people might have zero problems with sleep but gain heaps of weight on it. These are complex drugs with unpredictable effects and that’s why treatment is so challenging!

I do have some sympathy for mental health care and support practitioners who prefer people with mental illness not engage in ‘drug talk’ with each other.

• Sometimes it can be a distraction from talking about the unmet needs and life experiences that are the focus of a support group or counselling session.
• Perhaps it can encourage people to hope there may be a ‘quick fix’ solution if they can only find that silver bullet medication or combination of medications.

But drug talk can be an important ‘counter-discourse’ when one is needed. For instance, today’s ABC News report makes the fair and important claim that switching drugs is difficult or not an option — but this may leave readers with the impression that switching is impossible, and a small amount of drug talk about experiences of switching can help offset that impression.

Drug talk is unruly but its diversity and complexity are true to life

Like any discourse, counter-discourse is inherently open-ended. The possible statements in it reflect all the different experiences of medication use. Heidi, whose story of being affected by the Seroquel shortage beautifully anchors the ABC News article, could respond quite fairly that her past bad experiences with other medications means that switching is impossible — for her and others in a similar position.

Drug talk as a discourse is less constrained than ‘psychoeducation’ about medication by prescribers and mental health professionals. My broad sense is that non-peer practitioners are unwilling to acknowledge that mental health drugs don’t all work for everyone. As a result we start everyone off on the same ‘first line’ therapies — lexapro for major depressive disorder, lithium for bipolar 1 and Seroquel for bipolar 2 — even though many people won’t respond or struggle to manage their side effects. We are in desperate need of evidence that helps clinicians anticipate which patients will benefit from what.

So there’s enormous value in patient ‘drug talk’ that acknowledges people are diverse, brains are weird, what works for me may not work for you, what works at one point in your life may stop working at another, and so on. It emphasises the relationship between diversity of people and experiences and treatment ‘success’ that reflect person-centred and shared treatment decision-making.