An article by Jonathan Gornall (right) in today’s Daily Mail featured a study carried out on behalf of the All-Party Parliamentary Group for Prescribed Drug Dependence, and published in the journal Addictive Behaviors.
The review, one of the largest ever carried out of studies investigating the incidence, severity and duration of reactions to antidepressant withdrawal, concludes that the phenomenon is not only real, but more widespread, severe and long-lasting than doctors have been led to believe by years of guidance from the National Institute for Health and Care Excellence (NICE).
Researchers looked at 23 studies published over the past 20 years and concluded that 56% of all patients on antidepressants suffer withdrawal symptoms, of which 46% said their symptoms were severe. The authors estimate that in England alone, where one in six adults takes antidepressants, 4 million people may experience symptoms when withdrawing from the drugs, and around 1.8 million may experience these as severe. They also found that it’s “not uncommon for patients to experience symptoms for several weeks, months or longer”, with some having debilitating symptoms for years.
These findings, say the authors, make a nonsense of the NICE guidance, which advises prescribing doctors that while withdrawal symptoms ‘can be severe’, they are ‘usually mild and self-limiting over about one week’. The current guidance from NICE “is not only out of date but doesn’t respect the evidence base”, said James Davies (left), co-author of the new paper and a reader in medical anthropology and mental health at the University of Roehampton.
And the personal cost to patients is incalculable. Dr Davies suggests the faulty guidance is causing “many doctors to misdiagnose withdrawal symptoms, often as relapse, resulting in unnecessary and harmful long-term prescribing”. That’s because when people come off antidepressants and then experience withdrawal: “The doctor looks at the NICE guidelines and concludes it can’t be withdrawal. Patients are regularly having their withdrawal reactions either denied, ignored or, most concerningly, misdiagnosed as a relapse in their condition, at which point the drugs are reinstated.” As a consequence, the length of time people are kept on the drugs has doubled since the guidelines were issued in 2004. Dr Davies suggests that the existing guidelines have contributed to the doubling over the past decade of the number of adults in England on antidepressants — an escalation he describes as nothing less than “a public health crisis”.
Although many people say that these medications have helped them, there is no scientific proof that the drugs do so by reversing a ‘chemical imbalance’. There is also evidence that, for most, they’re no more beneficial than placebos. “‘But unlike placebos, they cause side-effects and withdrawal problems,” says Dr Davies.
The new review of evidence has been submitted to Public Health England, which is conducting a review into prescription pill dependency. It has also been sent to NICE, whose current guidance is based chiefly on a paper presented at a psychiatric symposium on ‘antidepressant discontinuation syndrome’ held in Phoenix, Arizona, in the U.S. in December 1996. The symposium was funded by pharmaceutical company Eli Lilly, the manufactures of SSRI antidepressant Prozac, now rebranded as Fluoxetine. “The understanding of antidepressant withdrawal was significantly shaped by that symposium,” says Dr Davies. But neither that paper nor a later one relied upon by NICE “cites a single source that supports the one-week claim.”
“We’ve looked very thoroughly for the evidence to support the NICE advice, and there isn’t any,” adds John Read, a professor of clinical psychology at the University of East London and co-author of the new paper. “There’s no way they can put out the same advice again once they’ve read this.”
Dr Joanna Moncrieff (right), a psychiatrist and leading critic of the overuse of antidepressants, welcomes the research and says it’s imperative that NICE updates its guidance. “This paper shows that official documents and the psychiatric profession have not taken this issue seriously, not put enough effort into researching it and not wanted to face up to the problems that these drugs can cause,’ she said. “We’re giving people these drugs for years on end and we haven’t bothered to work out what happens to them, how that affects the body, and what happens when people stop them. That seems just outrageous, a terrible situation.”
Many, she believes, would not start taking antidepressants if they knew the battle they might have to get off them: “There are lots of people who contact me who have struggled to get off this medication and feel so angry that this was not highlighted to them. This data is now there, and both doctors and patients need to be much more cautious about starting antidepressants in the first place, because it is quite clear that getting off them is not easy for a substantial number of people.”
The new research casts doubt on the official view that withdrawal symptoms from antidepressants are usually mild and short-lived, as set out in NICE guidelines and also in a recent statement from Professor David Baldwin (left), chair of the psycho-pharmacology committee of the Royal College of Psychiatrists. Professor Baldwin stated in a letter to The Times, that: “In the vast majority of patients, any unpleasant symptoms experienced on discontinuing antidepressants have resolved within two weeks”. He then resigned after an overwhelmingly negative response to this comment from doctors and patients alike.
Professor Wendy Burn (right), president of the Royal College of Psychiatrists, who originally supported Professor Baldwin’s erroneous statement, said: “As this review shows, for many people the withdrawal effects can be severe, particularly when antidepressants are stopped abruptly. We are pleased that Public Health England is prioritising dependence on, and withdrawal from, prescribed medicines as an area of review, and welcome NHS England’s referral to NICE asking that they do the same.”
“We are very much hoping that our research will influence the direction of NICE’s new guidance,” said Dr Davies, while John Read (left) added: “We want NICE to acknowledge that antidepressant withdrawal is more common, long-lasting and severe than current guidelines state, and to oblige doctors to warn patients.”
In a similar article in the Guardian, Oliver Letwin MP (right), chair of the APPG, said: “This systematic review provides important new data on antidepressant withdrawal which will be considered by Public Health England as part of their current review into prescribed drug dependence. The data suggests that existing medical guidelines in this area should be urgently updated to reflect the fact that antidepressant withdrawal is much more common, severe and long-lasting than previously stated. Furthermore, we hope that other medical bodies will take note of this new research, and update their own guidance accordingly.”
Paul Chrisp (left), director of the Centre for Guidelines at NICE, confirmed that NICE is looking again at its guidance. “In July 2018, the committee met and concluded that the current evidence base needs updating to include research from July 2016 onwards. It is important that the final recommendations are based on the most up-to-date evidence possible. In addition to updating the existing evidence reviews, we will include new work on patient choice and a focus on shared decision making. We hope the final guideline will allow people with depression to be offered the best treatments and reach joint decisions about their care that reflect their preferences and values.”
Jonathan Gornall’s article in the Daily Mail also includes the personal stories of just two of the millions who have suffered terrible withdrawal symptoms.
The first of these is 63-year-old Stevie Lewis (right) who, at the age of 41, went to see a GP in Bristol for help with insomnia after struggling with the pressures of starting up a business consultancy. She hoped that she’d be given something to help her sleep. “But to my surprise the doctor announced that I was on the edge of clinical depression – what my mother’s generation would have called a nervous breakdown,” she recalled.
And instead of sleeping tablets, she was given a prescription for Paroxetine, formerly known as Seroxat. “I was completely shocked, not least when he told me I had a chemical imbalance in my brain,” said Stevie, “I thought very carefully about whether I should take this drug, but in the end I did, because I believed him – he was my doctor.”
However, her shock at being prescribed an antidepressant was nothing compared with the horror that awaited her when she tried to wean herself off Paroxetine. Stevie did not know this was the start of a 20-year battle to extricate herself from the grip of a drug she never needed, during which she would struggle with appalling side-effects that doctors refused to acknowledge were caused by withdrawal, dismissing them as a return of her original symptoms.
Antidepressants, she was told emphatically, weren’t addictive and she could stop taking them whenever she felt like it. But when she tried, she found herself running a gauntlet of horrific side-effects, including extreme anxiety and an irrational terror of everyday acts, objects and places. At times, she felt she might be going mad.
She decided to come off Paroxetine for the first time after taking it for about five months, but within a few days began to suffer ‘tremendous nausea and dizziness’, which lasted for two weeks. She had no idea it had anything to do with the drug – neither did her doctor, who diagnosed labyrinthitis, an inner-ear disorder affecting balance. In fact, dizziness is a well-documented side-effect of suddenly stopping antidepressants.
In March 1998, Stevie went reluctantly back on the drug after suffering three miscarriages and the death of her mother. “Looking back, all I really needed was grief counselling,” says Stevie, now 63. “It’s absurd, given what I’d gone through, that someone could suggest I was feeling low because of a chemical imbalance in my brain.”
After a year back on Paroxetine, Stevie again decided to quit – “but this time I just couldn’t do it”. Every time she tried, a few days later she’d feel highly anxious and tearful, developing insomnia. Her doctor said it was anxiety disorder and told her to stay on the pills.
It was only in 2002, when she made contact with a support group online, that she realised she’d become dependent on the drug and was experiencing withdrawal from it. “It had been a shock to be told I was on the edge of a nervous breakdown, and then another to be told I had a chemical imbalance in my brain — now I was a prescription junkie,” said Stevie.
It would take her another 15 years to get free of Paroxetine. Time after time, and with the support of a new doctor, she tried tapering her doses, using specially designed syringes to administer ever smaller amounts of Paroxetine in liquid form.
“I’m strong, capable and strong-willed,” she said. “I didn’t want to be taking this stuff, but I couldn’t get off it.” She’d manage to get below the liquid equivalent of 3.56mg before the withdrawal symptoms kicked in again.
She attributes the break-up of marriage in part to the strain: “in 36 hours, I’d change from a normal human being to a crying wreck”.
And when she met a new partner in 2006, Stevie decided to stick with the smallest dose she could manage without triggering withdrawal symptoms. “I didn’t want to put the poor man through all that,” she said.
It was March 2013 before she plucked up the courage to stop even this low dose. She then went through “the most terrible withdrawal”, developing a movement disorder so extreme she could barely walk. She added: “I also had severe anxiety – terror, really. Waves of fear would go through me in response to normal, everyday things, such as eating, even smells and sounds set it off. It sounds insane, but I couldn’t even go into my own lounge. Something about that room triggered real fear in me.”
In September 2014 she married again, to Roger, now 75. He is a retired pensions services manager, and they live in South Wales. They’ve fought the drug together. She describes him simply as “a saint”. It took another three more traumatic years before the nightmare began to fade, and another year before she felt completely normal again. She was finally free of the withdrawal effects about 18 months ago, having spent years battling a drug she believes she should never have been given.
Unsurprisingly, Stevie says that she feels “badly let down” by the medical profession, but is focusing her energy on campaigning for awareness and pressing for a change in the NICE guidelines.
The second interviewee is James Moore (left), a former high-level civil servant from Bristol. James was prescribed the antidepressant Mirtazapine in 2012 after he began having panic attacks. After spending six years on the drug, he has been battling to get off it for the past year.
James’s problems began when he had to make thousands of people redundant in the department where he worked. It was, he recalled, “an extremely pressured time”, compounded by the fact that he and his wife Miranda were juggling caring for their two-year-old.
Then, at the end of 2011, aged 41, “all of a sudden I found myself experiencing daily panic attacks at work, panic that was all consuming and unbearable,” he said.
His GP diagnosed anxiety and depression, signed him off work and, in February 2012, prescribed James 15mg Mirtazapine. Like Stevie, James was told he had a chemical imbalance. When he felt the medication was actually increasing his anxiety – a common side-effect of some antidepressants – he paid to see a psychiatrist privately, who increased his dose to 30mg.
In 2013, after a year of treatment, he told his GP he wanted to stop. “His advice was ‘just take half a tablet for a week, then stop completely’, and that’s what I did,” James recalls. The result was worse than the problem that had taken him to the doctor in the first place. “I ended up barely able to function and losing touch with reality,” he said. He had severe insomnia, relentless anxiety, headaches, sweating, shaking spells, dizziness, confusion and agitation. “I thought I was becoming seriously ill with an undiagnosed condition.”
To his shock, he also began to have suicidal thoughts. Repeated attempts to reduce his dose resulted in increasingly worse panic attacks. “After only a few days of reducing the dose, I would be bedridden, unable to eat, experiencing relentless anxiety and depression — unable to function at all.”
But instead of identifying withdrawal as the problem, James’s doctor insisted he was experiencing a return of his original symptoms. James knew that his chronic insomnia and appalling headaches were not part of his original condition, so he went online to find out more – and came across others experiencing the same problems when trying to come off antidepressants.
As he fought to lower his dose, James made several unsuccessful attempts to return to work, but was eventually made redundant on health grounds in 2013. “I felt broken and lost, that I would never work again and never contribute to society. For a long time I felt withdrawal was impossible and that I would remain on the drugs for life, but not by choice.”
Fortunately he’s found a supportive GP who is helping him to withdraw slowly, using a liquid form of Mirtazapine and special syringes that, unlike pills, allow doses to be tapered by tiny amounts. He is now down to 40 per cent of his starting dose.
James, who has started a podcast, Let’s Talk Withdrawal, which has been downloaded more than 150,000 times, is grateful that he had the chance to try this method, as many don’t, but adds: “It is the most difficult and gruelling thing I have done.”
Update: October 14th 2018
The leading story in today’s Herald on Sunday is a report on “Scotland‘s secret addicts: the patients hooked on antidepressants – and harmed by withdrawal”.
Much of the article is devoted to an interview with Alyne Duthie, who is still suffering the terrible effects after stopping antidepressants in 2011. When she first started taking antidepressants, she said she felt relieved because it was “a chance to get some help“, but as the years went on she was troubled by brain fog, weight gain, digestive and bladder problems, and fatigue. Periodically, she tried to come off the drugs only to become “jittery and unwell“, subsequently reinstating them. By 2011 she had had enough and slowly tapered herself off Venlafaxine. The following year, she survived a suicide attempt, after which she ended up in a psychiatric hospital where antidepressants were reinstated along with benzodiazepines and strong sedatives like Zopiclone.
It took Alyne (right) another year to wean herself off the medication, but she suffered extreme – and lasting – side effects: “I used to get this burning sensation deep within my brain, especially towards the end of the day. Even my thoughts started to hurt me. Within days of coming off them I started having severe tinnitus, the kind that pierces your brain. I started having severe abnormal movements – my head, arms, and legs jerked constantly. To this day my head and my right arm still jerk occasionally. I would get boiling hot then freezing cold the next. I used to go around with cold packs strapped to my chest.
“Every sound was intolerable – even the sound of my clothes against my skin. I used to fear the sound of my fridge, and the birds singing outside. My balance was affected. I used to walk as if I had rubber legs. One of the worst symptoms I had was painful brain pressure which I still get to this day, though not as bad. It’s no exaggeration to say this used to make me scream in agony. I don’t know what my neighbours used to make of it.”
The most severe phase lasted four months, but Alyne continued to endure disturbing daily symptoms for years afterwards. Ironically, the duration of her ordeal eroded the support she had from medical professionals who preferred to diagnose it as relapse, not withdrawal.
“The longer it went on the more inclined my psychiatrist was to believe it was the return of my original illness, and not the drugs,” said Alyne. “This was by far the most terrible experience of my whole life. It far surpasses my original depression and anxiety. I didn’t think I was going to make it, and that was in no small part due to the blinkered attitude of GPs and my psychiatrist.”
Dr Peter Gordon (left), a consultant psychiatrist, knows first-hand how hard it be to speak out about withdrawal. He was prescribed the antidepressant Paroxetine (Seroxat) in 1998 for social anxiety and sleep disturbance, but ended up being sectioned with psychosis when he later tapered himself off it over an 18 month period.
“It was so severe I was hospitalised in a psychiatric unit,” said Dr Gordon, who now works as an old age psychiatrist, “I was tried on various medications and eventually I was put back on Seroxat and, quite frankly, I’m scared shitless to try and come off it now.”
Despite his own experience, he was reluctant to raise the issue with colleagues and feels there is a widespread “head in the sand” attitude to the potential scale of the problem. “I found it extremely difficult and for many years I just didn’t talk with my colleagues about it because I just knew I wouldn’t be believed. I would be seen as less credible and when I’ve raised it in meetings I’ve not had a good reception. If I had that problem revealing my experiences and learning over time, what might patients have?
“I’m not a pill-shamer. I’m not anti-medicine. I’m not anti-psychiatry. I’m a questioning psychiatrist. The evidence we’ve got insufficient to explain this so we should be listening to the evidence of the many people who have been brave enough to come forward now. I think it will take another ten years to know the scale of this issue but I think it’s much, much bigger than psychiatry ever wanted to acknowledge it to be.”
Glasgow GP Dr Des Spence (right) says that too many patients “find it impossible to stop them“. As a result, Dr Spence and his colleagues at the Barclay Medical Group have a blanket ban on initiating antidepressants on a patient’s first presentation and employ their own mental health staff to cut the waiting time for counselling.
“It may sound odd but it’s actually quite an effective way of reducing their initial use,” said Dr Spence. “People present in crisis, they offload, you can give them directions to other services, lifestyle advice, and then when you see them again they are often much better. So we’ve found this practice – of not initiating antidepressants at the first consultation – goes a long way to reducing their use.”
In a meeting at the Scottish Parliament earlier this year, Dr John Mitchell, the Scottish Government’s psychiatric adviser, presented no evidence to support his view that severe and life-limiting side effects from withdrawal from prescription drugs such as antidepressants are “very rare”. He did, however, manage to admit that the Scottish Government has no data on how many patients in Scotland are seriously harmed.