Stopping antidepressants: Exploring the patient's experience
19 October 2020
Professor Wendy Burn, old age psychiatrist and the immediate past President of the Royal College of Psychiatrists (2017-20), discusses the challenges of stopping antidepressants with an expert by experience, James Moore. James experienced panic attacks, lethargy and extreme discomfort whilst tapering his doses of antidepressants.
They also discuss the College’s new patient information resource on stopping antidepressants and what more is needed to better support patients.
Professor Wendy Burn: I'm Professor Wendy Burn, and I'm very pleased to be hosting this Royal College of Psychiatrists Podcast about the new patient information resource on stopping antidepressants. Antidepressants became a key issue during my time as president and an example of the importance of us as a College, understanding the range of experiences of those who seek support for their mental health.
Before we go any further, I'll give you some background. We know that antidepressants can help relieve the symptoms of more severe forms of depression and are helpful for many people, but they don't work for everyone and they do come with some side effects and some risks. One of these is it can be very challenging for some people to stop taking them. While some people can do so relatively quickly with no significant side effects, others can develop distressing withdrawal symptoms if they stop using them too quickly.
Our new information acknowledges this in a way that our previous information did not do enough. The College just felt it was important to do this for some time now. Last year, we published a statement, which recommended that the guidelines for doctors who prescribe antidepressants should be updated to better reflect this range of experiences. The body that produces these guidelines, the National Institute for Health and Care Excellence, or NICE for short, followed up on our recommendation and they changed their advice in October last year.
While this was a welcome development, it is equally important to provide advice to patients on how to stop using antidepressants. That is why we developed this new resource, which was done from input with those by experience withdrawal, as well as pharmacists, GPs, and psychiatrists. To explore these issues a bit further, I'm really pleased to be joined by James Moore who many of you may know from his campaigning work on providing better support for those stopping antidepressants. James has worked alongside me almost from the beginning of this. I'm really grateful to him for all that he's done. I'm very grateful for him joining today. Hi, James.
James Moore: Hi.
Professor Burn: Thank you for agreeing to do this.
James: Thank you, Wendy. Professor Burn, I'm delighted to be able to join you and delighted to get to talk about a new information resource, which I'm delighted to see, so excited to get to chat about it.
Professor Burn: Thank you. The first question, and can we start by you describing your experiences and why you were given antidepressants in the first place?
James: Yes. Of course. Like many people, probably some people listening, I personally have a long history of struggling to manage anxious thoughts and feelings and this resulted in a fear of vomiting known as emetophobia. That's something I've had a relationship with and had to deal with since a very young age. I managed despite this for many years. I completed a bachelor's and a master's degree and started working for the environment agency and got married in 2002. I had a daughter, Gemma, in 2009.
Then late in 2011, actually, pressures at work really started to ramp up. I was in the civil service and this was a time where there's a big government-led austerity program in the civil service. I suddenly found myself unable to cope with all the demands of me both at work and at home. I was experiencing daily panic attacks and, of course, I tried to struggle on as long as I could and deny and hide what was happening but every day in the office for me was filled with dread and fear really.
It was near Christmas and there was one of those inevitable sickness bugs going around the office and the fear provoked by that was a bit of a tipping point for me. I remember being consumed by an almighty panic attack and I just felt it was too much to deal with, so I left my desk. I left all my stuff there, I walked out of the office and I called my wife, Miranda and said, "Can you come and get me? I just can't do this anymore."
She drove and picked me up from work and I left that. I didn't know it then, but as I left the office, that was the end of my 20-year career, sadly. I saw a GP and he diagnosed me as anxious and depressed and told me that talking therapy would be many months away. At that point, I decided actually to see a private psychiatrist because I had this unrelenting need to try and get back to work as soon as possible.
The psychiatrist that I saw, she was very sympathetic and she identified that the phobia was the main issue for me and so she prescribed me the antidepressant, mirtazapine, this was early in 2012. Mirtazapine, plenty of listeners will know is less commonly used these days, but she chose it because I was struggling to sleep and I was struggling to eat, so it was hoped that the mirtazapine would control my pretty constant nausea and stimulate my appetite a bit. She also said that mirtazapine would calm my anxious thoughts and help prepare me for talking therapies. That's how I got on to the antidepressant in the first place.
Professor Burn: Thank you. That's sad to hear you talking about walking out of work and never going back. How useful did you find the antidepressants? Did they actually help at the beginning?
James: From a symptomatic point of view, it did make a difference in the beginning, it was a very strong-- Mirtazapine is quite a strong sedative, at least for me anyway. It did help me sleep and I strongly recall taking one on the first night, the first one I ever took and 20 minutes later, my wife Miranda had to help me upstairs to bed. It had quite an effect.
In those first few months of taking it, I found it did help reduce the insomnia and the nausea, and paradoxically, I found that the anxiety for me intensified, so sadly, I became completely housebound over the next two years. During that time, I'd got appointments for talking therapy, but I found it really difficult even to leave the house to go and have therapy. I made multiple attempts to return to work, but of course, each time the same thing happened and the anxiety became unmanageable. Sadly then, I was made redundant on mental health grounds in 2013.
Following that, we lost the house and had to move. I really, it's no exaggeration, I felt like I was on the scrap heap of life really. Of course, it was hugely tough on my family, they were watching me fall apart and couldn't really do anything to help. My wife was commuting to work with her job still and worrying what I was doing at home and I was barely getting through each day. Mirtazapine definitely in the early days, helped me sleep and helped my eating a bit, and I was grateful for that.
Professor Burn: Did you ever try a different antidepressant?
James: I didn't. With my psychiatrist, we of course talked about the options and firstly, we tried increasing the mirtazapine dosage, but I found again just for me that the anxiety was more troubling at higher dosages than smaller ones. Within a few months, I decided that I perhaps wanted to do something different, but I was persuaded to stay on the drugs and there wasn't really much alternative.
The psychiatrist said, look, other antidepressants, the side effect profile of those might make your nausea and sleep worse. After a while, then we turned to talking about, should we add an anti-psychotic or should we add a benzodiazepine? That's when I started to get a sense that although drug therapy helps some people, it probably wasn't something that I wanted to do longer term. It was then that I started to think about maybe trying to come off them.
Professor Burn: Can you take me through what happened when you started trying to come off them?
James: Yes, I can absolutely. Firstly, it's fair to say that not everyone struggles to get off the drugs, and those that do have difficulty aren't all going to have the experience that I had but I did have an intensely difficult time. I first attempted to come off after I'd been on the mirtazapine for about two years, by this time, sadly, the relationship with the psychiatrist had broken down, so I was fairly cautious. I went to the local general practitioner and their advice, I said I wanted to stop. Their advice was, just take half a tablet for a week and then stop on that. That's what I did, but that experience was really quite frightening and deeply unpleasant.
Within 24 hours of making the first reduction, my anxiety was increasing, but there were also new and unexplained symptoms. I experienced intense dizziness, restless agitation, and crippling headaches. In fact, I became bedridden for a short time. I couldn't even stand without help. Of course, not really knowing what to do, I said to my wife, "Well, perhaps I should just go back on to and stop the reduction to see whether things settle down," and of course they did quite quickly, and that's when a bit of a bell rang for me and I felt maybe this is a withdrawal effect.
I went back to the GP and I related this and they said, "No, it's relapse," but I didn't agree with that at the time, because for me the speed of onset of these new and unexplained symptoms, their intensity, and the fact that they eased once I went back to full dosage, that indicated to me that there was something different going on. Honestly, Wendy, that experience shook me up quite badly. I felt like I was trapped on the drugs really. I made two further attempts to reduce but each time, I failed and I was forced to give up halfway through.
I asked my local doctor for a liquid version to try and taper more slowly because I'd come to realize that that was the way that some people were approaching this but it was refused because it's quite costly. It was something like, £60 or £80 for a bottle of mirtazapine liquid as opposed to a few pounds for the tablets. I came to realize that with each failure that I'd had, that kind of physical and psychological hurdle for me to face became bigger after each failure.
It was only actually last year, after a painfully slow two and a half year taper that I managed to get off the drugs. That whole period was one of the most difficult things I've ever experienced, including being made redundant and losing a house and all that kind of stuff. Again, I stress that not everybody will have this so severely as but it was quite an experience.
Professor Burn: It's horrible that you have to go through it. I'm really sorry that you didn't get better support. What could your doctor have done differently? Looking at the information that we've produced, do you think that that will help?
James: Yes, I really do. When I thought back and look back on the advice that my doctor had given me at the time, of course, then I went and looked at the official NICE guidelines at the time. The NICE guidelines at the time, I think said that this is a mild and self-limiting thing over a period of a couple of weeks. The doctor was only really giving the official information that was available. Of course, there was a huge gap there because, for some people, that is absolutely true, it's a mild and self-limiting thing over a few weeks, but of course not for everyone.
Some people will be quite badly affected, some people very badly affected, some people mildly affected. The information that the College has produced, I am so grateful for because it gives the opportunity now for the person to discuss with their prescriber from a standpoint of being believed in the first place. My doctor's reaction to my experience was, I've never seen this before and this is impossible, it doesn't happen. Look, the guidelines say this. To a certain extent, we see what we look for. If a doctor believes this is a mild thing, then, of course, they are going to see things which confirm that to be true.
Now, why I'm so pleased about the work that the Royal College and yourself and the authors have done with this informational resource is that it really does underline that withdrawal can be a significant problem for a significant number of people. It's the start point of a discussion process between the prescriber and the patient such that it's not a combative thing from the off. The prescriber and the patient can work together.
Wendy, I do want to thank and acknowledge your work because I know that you've personally committed to seeing this through even though the discussion on this has been quite fractious at times and that there was quite a reaction to what was seen as the minimizing of withdrawal symptoms. I think that goes, I think that's explained by the depth of feeling on this. I want to thank you and the authors, George Roycroft, Professor David Taylor, and Dr. Mark Horowitz. I also want to thank the groups involved, the Council for Evidence-based Psychiatry, the All-Party Parliamentary Group for Prescribed Drug Dependence.
Also, all of those people that have spoken out on this because I don't think it's any exaggeration to say, I think this has put the UK in the lead in terms of a professional acknowledgment that we might need to approach withdrawal in a very careful and managed way to make sure that it's safe for everyone.
Professor Burn: I think it has and I'm grateful to you and all the people and all the people that you mentioned and all the people that have campaigned, and all the other people I came across along the way. GPs actually, I think GPs probably take people off antidepressants more than psychiatrists do. It was actually talking to GPs as well that helped me realize what a problem it was. We can't, you and I know there's a problem, the College recognizes there's a problem. We've got the leaflet, any thoughts about what we're going to do to really make sure it gets out there and that everybody knows about it?
James: Yes. That's a really good question. I think certainly I'd like to investigate whether it's possible to have some kind of promotional campaign around this for the wider prescribing community. As you say, Wendy, you're quite right, GPs are really in the front line and do an awful lot of prescribing and we'll do an awful lot of the deprescribing too. I was really thrilled to see that the Royal College of General Practitioners and the Royal Pharmaceutical Society was signed up to the guidance. I hope that they can lend a hand to raise awareness that this guidance is there because as we know, doctors are under pressure and have limited time.
If we can get this in front of them so they can see and understand it, I think it will go a long way to help. I think podcasting discussions like this help too. I also wonder more widely, is there anything we can do to spread awareness of this with the other psychiatric establishments like the American Psychiatric Association and the European Psychiatric Association? We might come on to talk about it but I started a petition on this some time ago and signatures on my petition are from all over the world.
The UK has made quite a bold step in recognizing this and starting to tackle it. I think the informational resources are a fantastic stepping stone now that we can build on for, can we start to talk about support services for people who might have been affected by withdrawal? Can we look at making liquid versions of antidepressants more widely available, and perhaps trying to reduce the cost of them? Can we look at solutions that other countries have adopted like, tapering strips in the Netherlands that we might come on to talk about?
I think what's so good about it is it opens the door now to all those conversations where previously, I felt that the doors have been a little bit shut and some, not all I stress, but some prescribers have been secret to blame the patient rather than see it as perhaps an issue with the drugs that we need to resolve. I see this opening a lot of doors, and I'm very grateful for that.
Professor Burn: You're right. It's a worldwide problem and I did speak about it. I went to the Canadian psychiatric meeting last year, and I did speak about it there. Interestingly, a lot of people were already aware of it. There's a bit of a divide amongst psychiatrists when you talk to them. Some people say yes, of course, why are you selling this as something new? We knew about it all the time. Others say that they weren't aware, so there is a bit of a divide, and you're right, we need to get it out there. I'm really keen, we get it out in them in the UK as well. I'm really keen that we get it into training, both from the psychiatrists under the GPs.
You mentioned tapering strips. You came to see me with some people that tapering strips. Can you tell us a bit more about them?
James: I did, yes. In the early stages of me coming to understand what was happening to me, I became very interested in learning from other people's experiences and also raising awareness that withdrawal was kind of affecting people. I started this petition, this was in 2016. That was calling for what I called at the time, tapering kits. At the time, I very naively envisaged that these might be made by the pharmaceutical manufacturers. They'd be pre-packaged tablets that would gradually and steadily reduce in dosage because I was of the opinion at the time that the manufacturers had a duty of care to help people off the drugs at the end.
The petitioner had been running for a little while. Then out of the blue, I was contacted by a doctor, Peter Groot. He was from the User Research Center of Maastricht University in the Netherlands. It turned out in one of these quirks of fate, I guess really, it turned out that he had conceived and developed exactly what my petition was calling for, only he called them tapering strips. These were based upon his own experience of withdrawal from venlafaxine. He'd been many things. He'd been a genetic researcher and microbiologist and all kinds of things.
He worked with a foundation and a not-for-profit pharmacy to develop these things called tapering strips. Essentially, they are pre-packaged rolls of whatever medication someone is taking. They're very clever in that they combine very small dosage tablets to make a much more variable and wide range of dosages available than we can get from conventional tablets. It's a little bit like using loose change in your pocket to make up any denomination of money. They developed tapering strips for, I think they've got it for something like 30 or 40 different drugs now, not just antidepressants but antipsychotics to benzodiazepines, even some anti-epilepsy, drugs and even I think proton-pump inhibitors and other things too.
What's really good about them is they are quite customizable. A person can work with their prescriber to say, "Okay, I want to come off over three months or six months or longer or whatever it might be." The reductions in the tapering strips are really gradual. You might stay on, let's say you're starting at 10 milligrams, you might stay at 10 milligrams for four or five days. Then it reduces to 9.5 for a few days and then nine and so on, and so on. The nice thing about it and I have actually used them myself. It's fair to say, without tapering strips, I don't think I would have got off mirtazapine at all because I was using liquid for the majority of my two-year taper.
When I was getting down to the very small dosages, it was becoming impossible to measure the liquid accurately. I couldn't get the tiniest syringe I could get was 9.5 milliliters. Measuring a fraction of that for my mirtazapine was so difficult. Tapering strips were nice because all I had to do was open each daily pouch and take the tablets that were in that pouch. I knew that by doing that, I was following a set reduction schedule. It was much more gentle on my nervous system because it wasn't a big drop or it wasn't a drop every day. It was a drop every few days.
I like the idea of tapering strips being available alongside liquid preparations. Whatever we need to turn to, to help people withdrawal because liquids are really good because they're practically infinitely variable, but some people might struggle with liquids. If you're elderly or if you have limited vision or there's so many other reasons that might make measuring tiny dosages of liquid very hard for people. Tapering strips are quite nice because you just take each daily allocation and you don't need to worry about anything else. You can get on with your life and focus on life, once you get past the drugs.
I ordered my tapering strips from the Netherlands. I remember showing Miranda, my wife, the last pill and saying, "Hopefully, this is the last one that I'll take." Also, the team in the Netherlands have done quite a lot of studies now on tapering strips and they are really successful when studied. It's arguable, of course, I think they are the most evidence-based, evidence-supported withdrawal method available because I haven't really seen too many other studies that are looking at comparing liquid and other forms. I know some people try and crush pills and weigh them or they might count beads if it's a capsule-based medication.
Some of those methods are quite difficult to be accurate about, so I was over the moon to see they're available. I interviewed Dr. Groot and obviously made use of tapering strips myself. Wendy, of course, you and I met and you met Dr. Groot yourself and we had a look at some. I hope that [crosstalk]
Professor Burn: Absolutely, and I was really impressed. I thought that they were great. Matt Hancock saying we ought to try them in this country. How did you actually get them from the Netherlands?
James: Well, I, fortunately, know a few psychiatrists privately. I had a friend psychiatrist who was willing to write me a private prescription for them. They can be ordered worldwide but they have to be ordered with a prescription. Of course, the other drawback is that we need to pay for them because they're not dispensed. The Netherlands has a private insurance-based health care system very different to the UK. I hope that at some point in the future, tapering strips or liquids or a solution like that can be available for everyone on the NHS at no cost. Obviously, we need to evaluate their effectiveness.
We know there are cost pressures on the NHS but I think the benefit of doing that is if someone goes to their psychiatrist or their doctor or their prescriber and their prescriber says, "Look, withdrawal is a possibility when you come off these drugs. I do need to tell you about that. It doesn't affect everyone but it can affect some people and some people can have a real struggle with it," if they can then go on to say, "-but we have systems in place and tools in place to help you manage that when you come to there, I think that's a good outcome for everyone.
It means that the person can try whatever they need to try knowing there is help available for them at the end of the process should they wish to finish treatment. The prescriber also knows that there are already tools and whatsoever to use when that person comes to them and says, "I want to end treatment now."
Tapering strips, they are brilliantly simple idea. I think there's great merits in looking at making their use as widespread as we can in the UK but there are some hurdles. Of course, there's cost.
At the moment, somebody could go and get them but they would need a prescriber to go through the form with them and to sign the form. You can design your own tapering schedule using tapering strips. Even to that they've been-- They're very cleverly thought about them are quite modular and how you approach them. For example, if you've reduced, let's say, from five milligrams to two and a half milligrams over 28 days, but then let's say that there's a death in the family or there's some event that causes you some real upset. You feel you can't go on with your taper, you can order a strip, which is just two and a half milligram tablets for the next 28 days.
People can pause during their taper, which is really clever. To design those tapers, I think it's best done with the prescriber, me sitting down with the prescriber and saying, "I want to come off in this amount of time. Perhaps we could build in a pause here, because something is happening or moving house or moving to another country, who knows what it might be." I think the beauty of these is they are simple but I think also it would be good if a prescriber and a patient can work on a tapering schedule that works for them. Tapering strips allow that to happen.
Professor Burn: Absolutely. That's really important and it's very important anybody coming off antidepressants does it with somebody helping them, a GP or a psychiatrist or a mental health practitioner, somebody to support them. It isn't something you'd just want to do on your own.
Professor Burn: Do you have anything else that you want to say?
James: Well, I just want to reiterate really how pleased I am to see the guidance. I think sadly, I need to stress, Wendy, I'm not lumping all prescribers into this. I have heard people say that once, people, they started to struggle with the drugs and they had problems coming off the prescriber didn't really want to know much about that. The sad thing about that is, if prescribers aren't paying attention to those difficult experiences, then we miss learning key points that could really help in the future.
I see the guidance as breaking down that reluctance to discuss difficult experiences because those difficult experiences can teach us a huge amount actually about safe withdrawal for people. Helping people who comes to the end of treatment for whatever reason and want to get on with their lives and do something different. I see that the guidance is hugely important in helping that conversation happen. I really hope that obviously, we can go on to look at perhaps telephone support or support services and making the tools for withdrawal widely available for people because I think there's a lot to be learned there. I think the UK has a real chance to become a real leader in that.
I also hope that we can acknowledge that there are people sadly like me. I'm still having a really difficult time of it, even though I came off a year ago. There are still some prescribers that say, that's not possible but sadly, it is possible. Not for many, but some people have a really, really long drawn out difficult time of it. I hope we can put some research effort into, can we help those people too? I think the outcome of that is good for us all. It's good for prescribers, it's good for patients. It's good for the health services. I see it as part of deprescribing, really to have a good solid understanding of what happens, not just at the start of treatment but at the end, too.
As I said, Wendy, I want to acknowledge that you've personally seen this issue through despite moving on as the Royal College of Psychiatrists president. You've maintained an interest in this, despite sometimes bruising discussions, back and forth. I look forward to a time where a prescriber can honestly inform the patient that withdrawal might be an issue they have to deal with in future, but that we have support systems and tools in place to help them through that.
Professor Burn: That would be wonderful. This is just the beginning. Isn't it a quite a lot of work that we need to do to get there. I suppose the other thing to emphasize, for any doctors listening to this, do listen to your patients. Thank you very much for joining me, James.
James: Thank you, Wendy. It was a pleasure to get to chat. Thank you to you and the authors for all the work on this.
Professor Burn: Thank you. Bye-bye.