Antidepressant withdrawal: why has it been ignored for so long?

This podcast is by the team behind the Pharmaceutical Journal, the official journal of the Royal Pharmaceutical Society.

This is the introduction given by the PJ team:

Until recently, the withdrawal symptoms some people experience after stopping an antidepressant were not recognised as a serious problem.

However, they can be extremely distressing, and so patients have been forced to set up their own online support groups to share information how best to taper antidepressant doses.

In this episode, executive editor Nigel Praities talks with Adele Farmer, founder of SurvivingAntidepressants.Org, one of the largest peer-support groups, about her and many other patients’ experiences.

Wendy Burn, former chair of the Royal College of Psychiatrists, describes what has led to a remarkable turnaround in attitudes among specialist doctors to withdrawal symptoms in the UK, and David Taylor, professor of psychopharmacology at King’s College London, explains the latest evidence on how to prevent serious these symptoms from occurring.

Specialist mental health pharmacist Chris Johnson also speaks about his work with GP practices in NHS Greater Glasgow and Clyde, which has helped more than 10,000 patients stop taking their antidepressants.

Here is the guidance on stopping antidepressants from the Royal College of Psychiatrists:

This episode was produced by Geoff Marsh and additional research was carried out by Abigail James. We are grateful to Peter Groot from Utrecht University, Netherlands, for his help with this episode.

The following is a transcription of this podcast. 

Please Note: Any mistakes in the transcription are the fault of the transcriber, Dr Peter Gordon.

BBC announcer: “The number of adults in the UK who are experiencing some level of depression has doubled since the start of the Coronavirus pandemic according to the Office for National Statistics. Their survey carried out over a 12 month period found that in 1 in 5 people appear to have depressive symptoms that compares to 1 in 10 before Covid-19 hit. Amongst those most likely to suffer [volume fades out]”

Nigel Praities: “That was one of the BBC headlines in August 2020 and although the long term impact of the Covid-19 pandemic is still uncertain there are signs that more people have been taking antidepressants during this time. A recent investigation by the Pharmaceutical Journal found peaks of the number of children and young people taking antidepressants that occurred with periods of lockdown. But antidepressant prescriptions have been increasing for a long time and perhaps the Media is too focussed on reporting of the initiation of this treatment rather than the problems that some patients have coming off them.”

Adele Framer: “Well, I was, you know, I got my care from my friends on the internet. I took care of myself and it was a very, very distressing, lonely experience, which is the same as anybody else. Its, you know, realising that you don’t have any medical support is a terrible shock to people.”

Professor Wendy Burn: “We weren’t really there to talk about withdrawal, but I sort of looked round the table and said: ‘Is there a withdrawal problem with antidepressants?’ and every single GP said ‘YES’. So that was when I absolutely realised there was a problem which I had missed.”

Nigel Praities: “Welcome to the PJ Pod produced by the team behind the Pharmaceutical Journal, the official journal of the Royal Pharmaceutical Society, I am Executive Editor Nigel Praities.”

Nigel Praities: “If you search on Facebook or Google ‘antidepressant withdrawal’ you’ll find many patient support groups. Most of the groups are closed but some of them have tens of thousands of followers asking for help, swapping tips, or offering encouragement. The truth is, there is there is a massive global conversation between patients on how to cope with the symptoms that sometimes present themselves when stopping antidepressant treatment. And largely, it is taking place out of sight of the healthcare professionals that have prescribed the medication in the first place. Now you could argue that peer-led patient support groups are a really good thing. The ultimate in patient-empowerment. But, if you dig into these groups a little bit more, you often find a frustration that they are not getting the professional support they need to cope with the onslaught of withdrawal symptoms after stopping an antidepressant.”

Adele Framer: “I am Adele Framer, and I, ah, started the website to, ah, help people go off psychiatric drugs in a tapered fashion.”

Nigel Praities: “Adele lives in California, her website is run solely by volunteers and is one of the few peer-support networks that is open to view on the internet. Reading the case histories and discussions is a pretty sobering experience. You get a real insight into how destructive withdrawal symptoms can be after stopping an antidepressant. Adele started the website after many years of trying to get help for her own withdrawal symptoms.”

Adele Framer: “I experienced hypomania for about 6 weeks after coming off Paroxetine. So, I felt like I could do anything. I felt like I was Superwoman. I became extremely busy. I wasn’t sleeping very much. I was sweating a lot. I had brain-zaps, which are these, ah, sharp little buzzy feelings inside your head. You definitely feel that they are in your brain, and that they are an electrical sensation, a snap, or a buzzing, or a shock.”

Nigel Praities: “Once the hypomania faded, Adele began to experience other symptoms, such as sleep disturbances and disorientation. She was a computer systems designer but she had to leave that career after experiencing protracted withdrawal symptoms for 11 years after coming off Paroxetine. She went to see several psychiatrists about these symptoms but they weren’t taken seriously.”

Adele Framer: “So, so then I went to see a private psychiatrist, who was, ah, very . . . em, he was a professor, and he was very arrogant and he told me – and I kept on talking to him about my protracted withdrawal – and my problems dealing with it. And, eh, he told me that I was deluded.”

Nigel Praities: “It was these negative experiences that made Adele do research and find support in forums online and then eventually to set up her own website. Her website is accessed by thousands of patients from all over the world, including many from the UK, and is part of a web of support that patients themselves have constructed in the absence of support from their own doctors.”

Adele Framer: “Realising that you don’t have any medical support is a terrible to shock to people. So, ahh we did not, we do not have, any medical support. There is very little medical support event today for those who have withdrawal symptoms.”

Nigel Praities: “Part of the problem is that there are just so many different withdrawal symptoms, perhaps as many as 50. And whilst some people are absolutely fine after stopping their antidepressant, others really struggle. For those that do have symptoms; the dizziness, sleep disturbances, surges in anxiety, or horrible sensations such as electric-zaps in your body or brain, can be disturbing and deeply unpleasant.”

Professor David Taylor: “There seem to be some core symptoms that almost everybody experiences. Dizziness is particularly common. It is probably the most frequent symptom. It sounds pretty innocuous but the dizziness can be very profound, and, eh, inhibits one going about one’s daily business. And dizziness tends to be the first thing that people notice when they forget to take their medication and I have had this reported to me by innumerable people, too many to count.”

Nigel Praities: “That’s David Taylor, professor of psychopharmacology at Kings College, London. David is one of the most prominent experts in this area and is one of the authors of the Royal College of Psychiatrists advice on stopping antidepressants, first published in 2020.”

Professor David Taylor: “Em, alongside that we have these peculiar sensations of electric shocks, em, which can occur in the trunk and in the limbs, but also the head, when they are often referred to as ‘zaps’. These again are very common and they are diagnostic criteria really for antidepressant withdrawal syndrome, because they don’t tend to occur in any other situations. They seem to only occur in people withdrawing from antidepressants.”

Professor David Taylor: “But some patients can experience even more distressing outcomes after stopping an antidepressant.”

Professor David Taylor: “There were case reports of patients being admitted to hospital having stopped treatment, em, because their symptoms were so severe that it was considered necessary for them to be admitted for investigation, and this is before we became properly aware of the nature of the symptoms and the likelihood of them occurring. So, by that measure, we can see that they can be pretty profound, em, patients who are forewarned of them tend to tolerate them better, but they are pretty unpleasant. A minority of people, find them very unpleasant and have to withdraw from antidepressants very slowly, in some cases over many months or even years, so severe are the, em, withdrawal symptoms.”

Nigel Praities: “There are no reliable estimates of the prevalence of withdrawal symptoms. A review of 14 studies into antidepressant withdrawal in 2019, suggested that on average, around half of people stopping antidepressants experienced withdrawal symptoms, and around half of those rate them as ‘extremely severe’. But David says that the chances of any patient experiencing withdrawal symptoms depends on many factors, in particular, the type of antidepressant that they are taking, and how long they have been taking it.”

Professor David Taylor: “So for example, Paroxetine, Venlafaxine, Duloxetine, tend to have the most severe withdrawal symptoms, em, they tend to have the highest frequency of withdrawal symptoms. Nobody knows quite why this is, but it is probably something to do with the half-life, it may also have something to do with the affinity for the serotonin transporter: the higher the affinity for the transporter the worse the withdrawal symptoms seem to be. So, with those variables in mind, it is difficult to put a figure on it. But I would say, for most people on medium to long term treatment, withdrawal symptoms are inevitable.”

Nigel Praities: “Now, we must say at this point, that antidepressants work for many people, and stopping an antidepressant should only be considered in patients with depression who have been in remission for at least 6 months, and longer for those at higher risk of relapse, according to NICE guidelines. But for those who have stopped, or reduced their dose, until very recently, any withdrawal symptoms they experienced were often ignored or not taken very seriously. In the UK that all changed in 2018 when the Royal College of Psychiatrists was asked to submit a statement by the TIMES newspaper on its position on antidepressant withdrawal. Here’s Wendy Burn, who was Chair of the College at the time.” [Factual correction – at the time Wendy Burn was President of the Royal College of Psychiatrists]

Professor Wendy Burn: “It was signed by myself and Professor David Baldwin, he was Chair of the Psychopharmacology Committee of the College at the time. And what we said, em, in this letter, was in the vast majority of patients any unpleasant symptoms have resolved within 2 weeks of stopping treatment. And that was based on the NICE guidance at the time, em, and also my, my clinical practice: I really hadn’t seen a big problem with withdrawal.”

Nigel Praities: “It was a run of the mill, seemingly innocuous statement, nothing to worry about from the College’s perspective. But after its publication came an unexpected reaction.”

Professor Wendy Burn: “Oh my Goodness, this sparked a furore. There was radio interest, there was tv interest, I got massively trolled on social media. I wasn’t expecting any of this. Formal complaints were made about me to the College and to the GMC. A group of Scientologists wrote to the GMC about me saying that I ought to be, em struck off. So there was quite, em, em, quite a lot went on. So I was surprised. I was taken aback. I thought it was a fairly, em, bland letter just quoting, em, NICE guidelines. I was really surprised. Eh, so I thought I would look into it a bit more.”

Nigel Praities: “Wendy did some research, she went to meetings, looked at the online patient forums, spoke directly with patients and GPs. And like all good scientists, in the face of mounting counter-evidence, she changed her hypothesis.”

Professor Wendy Burn: “I think the thing that really clinched it for me was GPs. So I went to a big meeting at the Royal College of GPs and we weren’t really there to talk about withdrawal, but I sort of looked round the table and said: ‘Is there a withdrawal problem with antidepressants?’ and every single GP said ‘YES’. So that was when I absolutely realised there was a problem which I had missed.”

Nigel Praities: “The College, under Wendy’s leadership, has become a major voice for change, pushing, amongst others, for a changes in NICE guidance on withdrawal symptoms, producing guidance for both prescribers and patients on how to taper antidepressants, and working with the NHS to look at better support for those experiencing the damaging effects of withdrawal. In 2019, Public Health England came out with a landmark report looking at drugs that cause dependence and withdrawal symptoms. It recommended several changes to help patients taking medications such as benzodiazepines, opioids, and antidepressants. These included a helpline to provide advice, new guidelines on safe prescribing and withdrawal from NICE, and a review of the way medicines are approved by the drugs regulator, to take into account the risks of dependence or withdrawal when manufacturers apply to have their products available for use in the UK. We have yet to see these recommendations being put into practice and there remains a huge challenge to educate all those caring for patients with depression that antidepressants must be reviewed regularly and careful deprescribing considered in those either in remission or not getting benefit from them. But for Wendy, the most surprising change has actually been how informed patients now are.”

Professor Wendy Burn: “Actually, funnily enough, for the first time I have been quite grateful to the Daily Mail. So I had a patient quite recently that I wanted to start on antidepressants, and obviously need to give informed consent and explain the problems, and she said: ‘oh I know, I have read about all that in the Daily Mail’. So there we are [Professor Wendy Burn laughs and, whilst still laughing says] so the public are informed. Yes, she was prepared, and she made the decision that she wanted to take antidepressants but did know of the problems and that it would be a good idea not to stay on them too long.”

Nigel Praities:  “There have been some pharmacists who have been quietly working away at this for years, supporting tens of thousands of patients to stop antidepressants gradually, minimizing any withdrawal symptoms they may be experiencing.”

Chris Johnson: “So my name is Chris Johnson. I have  what they would probably call now a portfolio career.”

Nigel Praities: “Chris Johnson is a specialist mental health pharmacist who works for NHS Greater Glasgow and Clyde. He also advises the Scottish Government on mental health prescribing. Chris has been working with GP practices in his area since around 2004 to train them to review patients on psychotropic medicines. He started with benzodiazepines and opioids.”

Chris Johnson: “There was myself and my colleagues who we used two different options. One was facilitation, where basically we teed the GPs up to review the people and we put in step-down schedules and enabled GPs to review people and reduce them that way. The other way we did it was we ran it as a pharmacist clinic, so me myself as a prescriber at the time, invited people in, reviewed them and managed the reduction that way.”

Nigel Praities: “Chris and his colleagues then moved on to review people on antidepressants. Around the same time the Government in Scotland introduced so-called HEAT targets in 2006 which intended to stem the rise in antidepressant prescribing in Scotland by 2010. But Chris’ approach was slightly different. He wanted to find those patients who had slipped through the cracks and perhaps not have had any of their medicines reviewed for a very long time.”

Chris Johnson: “So we tried to target it and narrow it down to the people who hadn’t been reviewed within the last 6 to 12 months. So what we asked for was 40 patients per 1000 registered patients and what that worked out, if you were in a multi-partnered practice, that would be 10 people per GP. So small numbers. What we then did we got GPs to review them. We did not provide any extra information. We just said as part of usual care could you review these people. And what we found from that is that 25% had a change in treatment, 7% stopped, roughly 10% changed drug and changed dose, and the rest had a reduction in their dose.”

Nigel Praities: “With Chris and his teams help, in the Glasgow area, hundreds of General Practices have reviewed   well over 10000 patients prescribed long term antidepressants. Nationally, the Scottish Government retired its HEAT targets as they were deemed inappropriate without greater access to alternative therapies for people with depression. But Chris has carried on with his important work and he says the key thing is to take a structured approach to minimize withdrawal symptoms and to build a rapport with patients. You can tell that he cares a lot about ensuring that patients know what they are getting into and that the most important thing is that patients trust the people who are advising them to take this step in their treatment.”

Chris Johnson: “So, for example, you could stop this tomorrow and see how you go – would you be happy with that? Yes, no. Okay, let’s do that and I will give you a phone next week to see how you are doing. Or, what about if we reduce the dose? So, say they are on 40mg of Fluoxetine, what if we reduce it to 20mg and review how you are doing in a couple of weeks. Would that be okay? Yeah, that’s fine. And then plan a step-down from there. For example, an older lady that was on Sertraline, I think she had 100mg – she said ‘ahh son, that’s no making much difference tae me, I have been on it since my husband died and I don’t think it is making much difference.’ So do you want to reduce it? Will we reduce it a bit? So we brought it down to 50mg for a month. I said to her ‘how are you getting on, are you feeling okay?’ ‘I feel fine, no difference’. Okay, let’s reduce it by half, eh, to 25mg. So I made sure that she could half the tablet no problem. And then, another month, we stopped it. And then followed her up in 3 to 4 weeks see how you are going. Then she was fine. I think she was comfortable, but then I know she had a discussion with me about other clinicians, not within my practice but secondary care clinicians because she went to a falls clinic, and they were very abrupt with her. She, quite rightly highlighted the deficiencies in their rapport and how they were unconstructive and how they responded to her questions, her genuine concerns. Whereas, I had, she had seen me as being constructive so I build the rapport ages before she went to that clinic and that worked well for her. But I know, if I did something wrong she would have told me, quite rightly. You know ‘that’s a shocker son, don’t do that again’. You know, which is okay.”

Nigel Praities:  “Chris makes it sound easy, but actually the science behind tapering antidepressant doses is complicated. We will put a link to the advice on tapering by the Royal College of Psychiatrists in the show notes, as it has some examples of schedules that are really useful. As David Taylor, one of the authors of that advice the course of coming off an antidepressant will vary, patient by patient, drug by drug, and there may be some set-backs along the way.”

Professor David Taylor: “So, if we take Sertraline and somebody might be on 100mg, then a linear dose reduction would be: 100 to 50, to 25, perhaps to 12.5, but then to stop. And if a patient can do that without symptoms, or without severe symptoms, then that is a perfectly reasonable way of doing it, over several weeks, perhaps a month. Other people might find that they need to take longer or that the changes in dose, the reductions in dose, need to be successively smaller. So, if we take the, em, Sertraline example again, if you look at the action of the drug related to dose, em, you can see that the reduction from 100mg to 50mg only reduces the effect of the drug, in pharmacological terms, by a few, 2 or 3 percentage points. So, by that I mean, you might have 90% occupancy of the serotonin transporter at 100mg and 87% at 50mg. You can see immediately that once we get to 50mg we are standing on the edge of a cliff in respect to pharmacological activity. So the next reduction might be to 25mg, or it might be to somewhere in-between 50 and 25mg, and then to 25mg, and then the dose reductions might get smaller from that point. So, from 25mg, to 20mg, to 17.5mg, to 15mg and so on.”

Nigel Praities: “What David is describing here is something known in the trade as hyperbolic tapering and interestingly those patient groups we were describing at the top of the episode are the ones who devised solutions to help people taper their antidepressant dose effectively. As David explains.”

Professor David Taylor: “If those dose reductions, those small dose reductions are necessary, we do run into problems in respect to how we measure those small doses. Er, there are liquid preparations of a lot of drugs available which can be used. You can halve and quarter tablets with a proprietary tablet-splitter. Patient groups have found lots of different ways of doing these small dose reductions which include: weighing out a drug powder on jeweller’s scales; counting beads in capsules, and, em, so on and so forth. That reminds me to mention that patient groups have been aware of this method of reduction for much longer than the professional side.”

Nigel Praities:  “In the absence of guidance from healthcare providers, patients have taken this into their own hands and have navigated the dark woods of withdrawal with the light from fellow or former travellers. We have a long way to go but the encouraging doing is that patients are no longer alone. Increasingly they will find healthcare professionals, such as pharmacists, much more informed, understanding and willing to listen when it comes to withdrawal symptoms and how to take their antidepressants effectively. Finally, let us return to Adele to hear her hopes for the community she supports.”

Adele Framer: “I look forward to the day that people do not need my website and that is because they can go to their doctors and they can get the understanding and the care that they need for withdrawal. More than that, I hope that they don’t experience withdrawal because their doctors learn how to taper them properly. So I look forward to the day that, yeah, I am completely out of a job. I am completely out of my unpaid, volunteer job” [warm laugh]

Nigel Praities: “That is a great answer. Thank you. That is a great place to stop.”

[Computer voice: ‘Recording stop’]