Starting a medication is easy...stopping it can be much harder

Antidepressants need instructions on how to stop them, just like cars need brakes.

Recently in Australia on a lecture tour, Mark Horowitz, a Clinical Research Fellow in Psychiatry in the UK’s National Health Service and trainee psychiatrist, said doctors should not be prescribing antidepressants without warning patients about the difficulty of stopping the drugs.

“You wouldn’t sell a car without brakes,” said Horowitz, “I think the same should apply to antidepressants. The drugs should come with instructions on how to stop them safely.”

For decades, patients have been told that withdrawal symptoms are “mild and only last 2 to 3 weeks.”

But Horowitz said that’s not true for most people who’ve been taking the drugs long-term – and the longer you’re on them, the harder it is to stop.

Mark Horowitz, Clinical Research Fellow in the National Health Service

In Australia, the average time a person is on antidepressants is 4 years. Half of people on antidepressants in the UK have used them for more than 2yrs and in the US, half of people taking antidepressants are on them for more than 5yrs.

Horowitz said antidepressants can cause profound withdrawal effects – anxiety, low mood, dizziness, headaches, brain zaps, akathisia – which can be worse than the original condition.

“The guidelines on withdrawal are based on extremely short-term studies of only 8 to 12 weeks, so they’re irrelevant to long-term users,” said Horowitz.

“It’s like a car company crashing its car into a wall at 5 km per hour and saying it's safe, and ignoring the fact that people are driving at 60 km per hour on the road,” he added. 

First-hand experience

When Horowitz was in Australia, he told me about the time his doctor prescribed him the antidepressant escitalopram (Lexapro) when he was a 21-year-old medical student.

“I was a miserable young man and if you've ever seen a Woody Allen film, you would understand what an erratic mess my family was,” said Horowitz. “I was told by my doctor the drug was ‘safe and effective’ and there was no mention of any problem with stopping it.”

Feeling reassured, Horowitz took the drug for the next 13 years while completing his PhD at King's College London. Over that time, he experienced a range of health problems and eventually decided it was time to taper off the drug.

That’s when everything changed.

“I was shocked,” said Horowitz. “I would wake up in full blown terror, like I was being chased by a wild animal and that terror would last for about 10 hours each day.”

“I went running until my feet bled. I listened to a million versions of meditations to try to calm down. Things around me appeared unreal. And that went on, week after week after week,” he recalled.

Unable to cope with the symptoms, he went back on the medication – the symptoms of withdrawal were far worse than the condition the drug was prescribed to treat.

“When I was 21 years old, I'd never had panic attacks, I'd never woken up in terror. I’d say my symptoms were about 3 out of 10…but after trying to stop the drug, my symptoms were a 10 out of 10,” said Horowitz.

“I quickly realised that what was described in textbooks and in published studies about withdrawal effects didn't reflect at all what was happening on the ground…I found tens of thousands of other patients reporting similar experiences online,” he added.

After taking SSRIs for a long time, the brain adapts to the increased serotonin levels (and other changes caused by the drugs), so when the drug is discontinued, the person struggles to adjust, and withdrawal symptoms commence.

In June this year, a systematic review and metanalysis of antidepressant withdraw symptoms, published in The Lancet Psychiatry, found that one in six people who stopped antidepressants experienced withdrawal effects. 

A major limitation of this review, however, is that it focused on short-term users, and therefore, probably underestimated the true rate of withdrawal in people who use antidepressants long-term.

Another systematic review of antidepressant withdrawal, published in Addictive Behaviors, found that more than half (56%) of people who attempt to come off antidepressants experienced withdrawals, and nearly half (46%) of them, described the symptoms as severe.

A call to action

For years, psychiatrists have maintained that for most people, withdrawal symptoms resolve within two weeks of stopping treatment.

In 2019, a group of academics, doctors and patients banded together in pursuit of much-needed change.

They sent a formal complaint to the UK’s Royal College of Psychiatrists, accusing the organisation of giving people false assurances and minimising the difficulty of antidepressant withdrawal.

After a review into the situation by Public Health England, the College launched a new online resource for people coming off their antidepressants.

For the first time, it acknowledged that some people can experience severe withdrawal symptoms which last much longer than expected, requiring “hyperbolic” tapering, a much slower type of dose reduction which become smaller and smaller over time.

In 2020, the College’s then-president, Wendy Burn penned a mea culpa in The BMJ conceding the “College’s position in 2018 had not been right” and therefore changed its position to give “clear recognition to the difficulties that can arise for some people when coming off antidepressants.”

Burn also appeared on BBC’s Panorama last year, and apologised to the public for not recognising the problem sooner.

Wendy Burn, psychiatrist and past president of the RCPsych on BBC’s Panorama, June 2023

Deprescribing antidepressants

Horowitz spent three years refining a set of guidelines for doctors to safely deprescribe antidepressants, in collaboration with Professor David Taylor, Director of Pharmacy and Pathology at Maudsley Hospital in London, and Professor of Psychopharmacology at King’s College London.

The book is the first of its kind. In Australia, the Royal College of General Practitioners recently endorsed the Maudsley Deprescribing Guidelines as a recognised evidence-based clinical resource for doctors (GPs prescribe the bulk of antidepressants in Australia).

The ‘general’ guidelines used by most doctors in Australia are inadequate for deprescribing antidepressants. The Therapeutic Guidelines state:

“Reduce the antidepressant dose by 25 to 50% every 1 to 4 weeks until the daily dose is half the lowest unit strength available…. Continue at the lowest dose for 2 weeks then stop”

Similar guidance is endorsed by the Royal Australian and New Zealand College of Psychiatrists. The college acknowledges that slower tapering might be necessary, but says it’s difficult in Australia because “current preparations of antidepressants do not allow for the dose to be reduced by such small decrements.”

In the UK, nine out of 10 antidepressants are available as liquids to allow more effective tapering at lower doses, but in Australia, only one is available in a liquid version. Compounding pharmacies can make liquid versions of the drug, or smaller dose capsules or tablets (e.g. tapering strips) if required.

“If someone is having trouble stopping, they should consider hyperbolic tapering,” said Horowitz. “That involves going off very slowly being particularly careful at the end because small doses can still have big effects.”

Horowitz ended up on four additional psychiatric medications to deal with the side effects of taking escitalopram (Lexapro) - what is often called a ‘prescribing cascade’ - but after two decades, he can finally see the light.

“Over the last few years, I've come off four out of my five drugs and I'm down to the last quarter of a milligram of my last drug,” said Horowitz.  “In next few months, I'll be drug free for the first time in 20 years.”

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