I would like to announce the exciting news that the UK government’s National Institute of Health Research (NIHR) has recently agreed to fund a new study to compare a gradual and supported programme of antipsychotic reduction with maintenance treatment. The RADAR research programme (Research into Antipsychotic Discontinuation And Reduction) has just started.
I have already described my worries about long-term antipsychotic treatment, and the flaws and limitations of existing evidence. For a long time I have felt that there just isn’t a good enough and long enough study on the pros and cons of long-term antipsychotic treatment versus reduction and discontinuation in people who have psychotic disorders, including those who are classified as having schizophrenia.
Moreover, there are increasing reasons to be worried about the effects of long-term treatment with antipsychotics. We have known for a long time that these drugs cause a range of serious adverse effects, including tardive dyskinesia, cardiac problems, hormonal abnormalities, weight gain, diabetes and sexual dysfunction. Recent evidence confirms earlier suspicions that they also reduce brain size and volume.1,2
While the inhibiting effects of antipsychotics may be useful for someone who is in the throes of an acute psychotic episode, over the longer term it is possible that antipsychotics leave some people in a worse state than they might have been without them. This possibility is supported by evidence from Martin Harrow’s long-term follow-up of people admitted with a psychotic episode,3 and by the seven year follow-up data from the Dutch First Episode randomised controlled trial of antipsychotic reduction.4 The Dutch trial suggested that people who had tried to reduce and discontinue antipsychotic medication, even if they did not succeed, functioned better than those who took it continuously.
Nevertheless, long-term antipsychotic treatment remains the standard recommended treatment for people who have psychotic episodes or a diagnosis of schizophrenia. The National Institute for Health and Care Excellence (NICE) guideline on treating psychosis and schizophrenia assumes that this is what people will have.5 People who have had just one episode may be supported to try and discontinue treatment, but most people with recurrent episodes are recommended to stay on antipsychotic medication for the rest of their lives. Mental health services put in a great deal of effort to ensure that people are ‘compliant’ or ‘adherent’ with this strategy.
Yet many people with psychotic disorders want another option. ‘Being told you have to take tablets for life is disempowering in the extreme,’ one service user told me. Many patients and their relatives sense the impairment the drugs can cause, and are desperate to see if they can do without them. Some find a sympathetic psychiatrist who is prepared to help them, but many don’t.
This is what a carer wrote a couple of years ago:
“If someone wants to stop antipsychotics, they are refused help, so it’s very difficult in spite of feeling of unease and worry about antipsychotic. It makes one feel helpless and more vulnerable. I worry about my son. It appears that more help is offered to newly diagnosed patients, but those suffering most are surely those diagnosed many years ago… [who] appear to be written off and expected to continue antipsychotics regardless of problems.”
I put this case to the UK’s National Institute of Health Research (NIHR) recently, and proposed that they fund a trial to assess the long-term outcomes of a gradual programme of antipsychotic reduction compared with standard ‘maintenance treatment.’ The NIHR agreed that this was an important issue, and that a new trial was urgently needed. The RADAR (Research into Antipsychotic Discontinuation And Reduction) study officially started in January 2016.
The RADAR trial will be similar to the Dutch study, but we will recruit people who have more than one episode of psychosis or schizophrenia, as opposed to people who have had a single or first episode. People who agree to take part in the trial will be randomised to receive maintenance antipsychotic treatment (staying on their current regime) or to have the antipsychotic reduction strategy. Participants who are randomised to the antipsychotic reduction strategy will have their antipsychotics reduced gradually with the support of a psychiatrist. People who want to try and stop the medication altogether will be supported to do so, but for others the aim will be to reduce the medication to a very low dose. The time this process takes will vary between different individuals, but we think it will take anything from 6 months to 18 months.
The main outcome for the study will be people’s levels of social functioning. Most long-term antipsychotic trials focus on symptoms or relapse, and we thought it was important to look at how treatment affects people’s lives more globally. We will, however, also look at relapses, symptoms, side effects of medication, employment and costs. We will be following people up for 2 years within the time-frame of this project, but we hope to follow people up for longer in the future.
Before the trial starts we are conducting a ‘Recruitment study’ to assess how many people would be willing to enter the trial, and how recruitment can best be organised and achieved.
The study is supported by a team of highly experienced researchers, including some well-known and eminent psychiatrists, all of whom are fully committed to the need for further evidence. We have a dedicated group of service users with experience of taking antipsychotic medication who will support the project.
I would personally like to thank the NIHR for supporting this study. The fact that it is being done will, I know, give great hope to many people around the world who feel they have been stuck on these drugs for years without being offered any alternative. The study will help to answer one of the most important practical questions in psychiatry: the question of whether the current approach of keeping people on long-term antipsychotic treatment is really the best thing to do, or whether we should be offering the opportunity to reduce and sometimes discontinue medication with medical support. Whatever the outcome, we need better evidence to inform our choices and recommendations.
* * * * *
References:
- Dorph-Petersen KA, Pierri JN, Perel JM, Sun Z, Sampson AR, Lewis DA. The influence of chronic exposure to antipsychotic medications on brain size before and after tissue fixation: a comparison of haloperidol and olanzapine in macaque monkeys. Neuropsychopharmacology 2005 Sep;30(9):1649-61.
- Ho BC, Andreasen NC, Ziebell S, Pierson R, Magnotta V. Long-term Antipsychotic Treatment and Brain Volumes: A Longitudinal Study of First-Episode Schizophrenia. Arch Gen Psychiatry 2011 Feb;68(2):128-37.
- Harrow M, Jobe TH, Faull RN. Do all schizophrenia patients need antipsychotic treatment continuously throughout their lifetime? A 20-year longitudinal study. Psychol Med 2012 Oct;42(10):2145-55.
- Wunderink L, Nieboer RM, Wiersma D, Sytema S, Nienhuis FJ. Recovery in remitted First-Episode Psychosis at 7 years of follow-up of an early dose reduction/discontinuation or maintenance treatment strategy: long-term follow-up of a 2-year randomised clinical trial. JAMA Psychiatry 2013; 70: 913-20.
- National Collaborating Centre for Mental Health. Psychosis and schizophrenia in adults: treatment and management. NICE Clinical Guideline. National Collaborating Centre for Mental Health: London 2014.
Thank you for all that you are doing, Joanna, and this is wonderful news. As one who was successfully weaned from the neuroleptics, eventually. I will say I highly recommend you follow these people for more than two years, it takes a very long time to heal from the neuroleptics. Especially since withdrawal from the neuroleptics can result in a drug withdrawal induced manic “psychosis.” And this can happen much later than the DSM states.
Personally, I was weaned off the drugs twice, and both times it did result in a manic phase (for me the accompanying ‘psychosis’ was actually an awakening to my dreams, and since I disagree with my psychiatrists’ belief dreams are ‘psychosis’ I make that distinction.) My first drug withdrawal induced super sensitivity mania occurred about six months after I was weaned from the drugs. The second manic reaction was an entire year and a half after being weaned from the drugs.
I truly hope the US will start funding such drug withdrawal trials, especially for the millions in this country who had the adverse effects of the antidepressants or ADHD drugs misdiagnosed as ‘bipolar.’ And also for all those abuse victims, who were misdiagnosed as ‘schizophrenic,’ which I understand is approximately 2/3’s of all so called ‘schizophrenics’ today. Not to mention all the foster children put on these drugs. As I finally got an oral surgeon to confess, which woke my last psychiatrist up, “Antipsychotics don’t cure concerns of child abuse,” especially after the medical evidence of it had been handed over.
And the neuroleptics truly are “torture” drugs, when given to initially non-“psychotic” / “normal” people with real life problems. Because they can create “psychosis,” via anticholinergic toxidrome. And they can also create the negative symptoms of ‘schizophrenia,” via neuroleptic induced deficit syndrome, too. And since these neuroleptic / poly pharmacy induced explanations for ‘psychosis’ are not listed as billable DSM disorders, no doubt, they’re almost always misdiagnosed. Again, thanks for all you do.
Report comment
Hi Someone Else,
Thanks Joanna this is wonderful news.
I also had a manic reaction to coming off lithium.
While I consumed maintenance levels of neuroleptic (depot) medication I was genuinely psychiatrically disabled, and when I tried to stop ‘abrubtly’ I nearly went mad.
When I switched to weaker oral medication I was able to return to gainful activity and independence. I then weaned myself very carefully off the oral medication.
I still suffered from “high anxiety” or neuroleptic withdrawal syndrome. I found that it was possible to get around this problem but it takes time and practice.
Report comment
Hi Fiachra,
Yes, being weaned off lithium can make a person manic. My drug withdrawal induced manias were the only manias I’ve ever personally suffered from, unless you agree with my former psychiatrist’s belief that “driving to Chicago,” from the suburbs, to see the same hairdresser I’d been going to for 15 years, is a “sign of mania.”
Being “manic” was kind-of fun, though. I would get up and dance for about two hours, then go ride my bike twenty miles, drive around “chasing cars” whose vanity plates seemingly coordinated with my thoughts and the music playing on the radio. I was a gardening fiend, rehabbed my home, it was a trip, like living in a world where everything and everyone were in perfect synchronicity. Perfect strangers would even come up and talk to me about my thoughts, which was so bizarre, because I couldn’t figure out how someone I didn’t know, could know what I was thinking. My pastor finally told me “some people can’t pray in private.” I’d never heard of such a thing. Who knows? Not the psychiatrists.
Report comment
Lithium and valium, cause anger and mania in me. Dothiepin gives me seizures, effexor sends me bipolar, zoloft use killed my baby………. None of these pills have anything good about them. Except for pharma, as they are extremely addictive, even though they dont work, and of course those mad psychiatists can blame the patient, and not the drugs.
Report comment
Hi Someone Else,
Thanks Joanna this is wonderful news.
I also had a manic reaction to coming off lithium.
While I consumed maintenance levels of neuroleptic (depot) medication I was genuinely psychiatrically disabled, and when I tried to stop ‘abrubtly’ I nearly went mad.
When I switched to weaker oral medication I was able to return to gainful activity and independence. I then weaned myself very carefully off the oral medication.
I still suffered from “high anxiety” or neuroleptic withdrawal syndrome. I found that it was possible to get around this problem but it takes time and practice.
Report comment
Yep, I went from situational depression, to major depression, to seizures, then I was told I was also PND, and or bipolar and of course (if I had told them about the voices ) no doubt would have been told I also have psychosis and schizophrenia…………AND I CAN TELL YOU EXACTLY WHAT PILLS CAUSED WHAT. I never ever had anything, till I took those very first meds, AT AGE 35, because I was feeling low????? and downhill all the way. All these drugs are torture drugs.
Yes I have got off them before, this time the hardest. Yes, I have been hit with psychosis damn over 12 months off the drugs. I am not the only one, as for attempting to take people off these drugs in 6 months? 12 months or 18 months later withdrawals will hit. Takes years, to do it slowly, and reduce the shock to the brain.
I truly think this trial is one of those purposely set up to fail.
Report comment
This is exciting news. I look forward to the outcome.
Report comment
It sounds like an important study, but it’s kind of scary to see it set up to look at a period of only 2 years. As I recall in the Wunderink study, after just 2 years it looked like the maintenance group might have been better off, with significantly fewer relapses. And it might be even more important to have more than two years to show positive results of guided discontinuation for a group that had multiple psychotic episodes in the past. So I really hope the study is extended past 2 years, or else I fear it may possibly become a study that could be used to support maintenance treatment…..
Report comment
Excellent point, Ron. My first thought was “megakudos” to Dr. Moncrieff, who is such a courageous, brilliant, articulate shining light on these issues…and I still feel that way, but your point is valid and very well taken. I think she’ll probably respond to it.
Report comment
you seem to have missed “but we hope to follow people up for longer in the future”. it’s pretty standard for initially funding of a study to be for a limited period of time. Typically additional funding would have to be secured through another grant application at a later date. There are a number of reasons for this. One is that it would obviously cost a lot more to do a long-term study and thus an application is more likely to be sucessful if the initial request is for a shorter period. The second is that this study will be contingent on being able to recruit enough participants and retain them over 2 years, which is challenging enough given the population we are talking about. Only after successful recruitment and retention over 2 years is known would you be able to do a meaningful long-term follow up. And sadly, 2 years is actually considered a long time in medicine because of the challenges and disincentives to conducting longer term studies.
Report comment
Another trial set up to fail. 6-18 months to wean people off these drugs? No where near long enough. All will suffer withdrawal syndrome sometime after they are off completely, around 6-18 months OFF THE MEDICATION. Then it will be said, ah look they all relapsed. As for the ones on low maintenance doses, they will be OK, as a low dose, has much more effect per mg, than higher doses.
Report comment
I too, hope Dr. Moncrieff responds to Ron Unger’s valid concern. For people who have been institutionalized in and out of ‘back wards’, being forcibly medicated for many years, two years is arguably not enough time for some individuals to detox physically and psychologically from years and years of trauma causing forced treatment, stigmatization, dehumanization, marginalization, dis-empowerment, emotional suppression, and learned helplessness. For many, the internalized message of hopelessness born by years and years of being told that you have an incurable disease of the brain and the only way for you to live in society is by blunting your emotions, negating your experiences, and chemically restraining your body and soul.
Institutionalization results in the rupturing of community and family ties and the only relationships institutionalized individuals have are with people who are paid to have relationships with them. Two years is not enough time to heal the ruptures born of isolation, form healthy relationships, find meaningful work, etc. even though these are CLEARLY the type of life affirming circumstances that reinforce positive thinking and creative problem solving, needed for NEUROPLASTICTY to take place.
I hope that the short term nature of this study isn’t a set up for failure, used as fodder by those who benefit from the current, failed paradigm of mental health care and scoff at legitimate critics of psychiatric myths.
Report comment
Absolutely, two years not nearly long enough. See my full comment below.
Report comment
Thanks to Dr. Moncreiff for years of clear thinking and advocacy for good sense in this area. I too am glad to hear of such a study. I share Rob Unger’s concern that 2 years is not enough time – the Open Dialogue positive 5 year outcomes were, at least in some cases, not nearly as positive at two years. Sometimes people go through high adventure sorting out their lives before they appear “calm” and “organized.” During such a period it can look like they are “sick”; it isn’t until later that their long term outcome emerges as a lot better than that of someone who has remained sedated, struggled less openly, and at 5 years hasn’t reached as high a quality of life.
I also wonder what the “support” of psychiatrists will be for those who are reducing their meds. Much of psychiatry’s “support” for patients is simply the act of giving out pills and assuring patients that they will help. What will the “tapering” psychiatrists do? I hope there will be real psychosocial support for both groups, including meaningful support for patients experiencing the stresses of coming off drugs. It is crucial that, when patient fear, anxiety or “high adventure” arises, doctors don’t think to themselves, “Well, this isn’t working, he’s really sick” and directly or subtly convey this to patients.
Report comment
Well I am horrified to hear of a study, already set up to fail…………… What is the point of it? 6-18 months to wean off medication? Absurd, they need years, minimum I would say for a decent trial would be 3 years to wean, MINIMUM.
Report comment
I am on my last med, seroquel, and am taking 2 years to wean down from 75mg to 0. What dose is one on for psychosis? 500=600 mg? And they expect people to get off these meds in 6-18 months? That is absolutely absurd. Cruel, and enethical……………………..Gosh I feel so sorry for the victims in this ridiculous trial.
Report comment
Will this be a double blind study?
Report comment
Dr. Moncrieff: May I sugggest that you and others cease to use the term anti-psychotic which, in my opinion is a marketing term and not grounded in reality for at least eighty percent of the people who take them? Neuroleptics would be a better term.
Report comment
This is correct. I also recommend that Moncrieff stop using the term “disorder” for psychosis. Psychotic states are not disorders or illnesses. They are understandable responses to overwhelming stresses of various kinds. If sufficient stress had existed in their early lives, Joanna Moncrieff and other professionals would quite likely be delusional, nonfunctional psychotic people stuck taking drugs within the system, rather than the well-functioning sane people they are today. Anyone can become psychotic under sufficient stress; it’s not a “disorder.”
Also, people don’t “have” or “not have” psychotic disorders… this is another illusion on Moncrieff’s part, although perhaps she doesn’t even believe it. New research by Van Os et al shows that psychotic experiences occur on a continuum fading into normality and that we cannot draw any sharp lines between those who have or don’t have these experiences.
The words we use are very important.
However, readers can be aware that to get such a study approved, Moncrieff likely has to pander to the authorities by calling people’s problems “disorders” like “schizophrenia”, even though I bet she doesn’t believe fully in these words…
Report comment
Absolutely, well said. I was prescribed these poisons to help me sleep…………. I refused them to begin with, as they were for psychosis, and schizophrenia, and I just needed a damn sleep aid. The psychiatrist, looked at me and said, “”ah, but if they work, they work””………….. everything to these mad psychs is a drug trial. Yep, they were another lot of freebies, out of the psychs cupboard………… god, lab rats we are.
Report comment
Great news! This has to be a really good thing. It’s really a long way off from the USA right now. One couldn’t imagine the NIMH, for instance, doing anything similar. They booted Loren Mosher out because he wasn’t under the tutelage of Big Pharma so much, didn’t they? Given a few good longer term studies perhaps even professionals in the USA might have to start paying attention. Right now, when it comes to ceasing to drug people to death, they’re not about to test their premises.
Report comment
This looks like a good study. Joanna, I strongly support what others are saying about extending the study period to 5 years. 2 years is not nearly long enough… as demonstrated in the Wunderink study and by the experience of many that recovering from a psychotic breakdown often takes 4-6 years or more. It often takes 12-24 months just to get a little bit of stability in one’s life after things have fallen apart, let alone really start to improve. At this point, the study looks interesting; but I doubt if it will yield very meaningful results given only a 2 year window.
A comment upon this, “People who have had just one episode may be supported to try and discontinue treatment, but most people with recurrent episodes are recommended to stay on antipsychotic medication for the rest of their lives. Mental health services put in a great deal of effort to ensure that people are ‘compliant’ or ‘adherent’ with this strategy.”
It should be pointed out that one doesn’t always have to stay in contact with psychiatrists and mental health services (leaving the system, when possible, is often the ideal option; many of those who do best are never heard from within the system again, generating Harding’s “Clinicians’ Illusion” about poor outcomes for those remaining within the System).
Also, it is often quite easy to deceive mental health services about whether or not one is actually taking the drugs. Families and sufferers should be enabled by those of us who have done it to learn about how to self-taper off the drugs and to deceive one’s treatment team is necessary. If staying in contact with mental health services is necessary for various reasons (e.g. to continue getting disability income), then lying to the treating doctors about what one is really doing (i.e. secretly self-tapering) is a viable option that should be encouraged by those of us in the underground. This is what I did and I recommend that others seriously consider it.
Mental health services often do not have the resources or surveillance necessary to reliably know who is taking drugs and who is not. Probably many more people than we are aware of are secretly self-tapering or noncompliant, but we wouldn’t know about it because they hide it for obvious reasons. This could be conceived of as another kind of “clinician’s illusion” – the illusion by a psychiatrist that one’s clients are reliably taking their drugs, when inevitably many of them are not. Near the end of my “treatment”, I used to delight in how my old psychiatrist naively thought I was taking the antipsychotics, when in fact I had stopped long ago.
The illusion persists that tapering off is unwise without the support of psychiatrists – this is a myth that only supports the illusion of psychiatrists as viable authority figures along with the false notion that the client and family should not trust their own intuition about what is best for them. A wealth of resources on how to self-taper now exists: http://www.madinamerica.com/psychiatric-drug-withdrawal/#/page/withdrawal-guides
Sufferers and families should be referred to these withdrawal materials so they can develop a sense of agency and feel that they can take the risk of doing what they feel is best (which may in many cases be self-tapering), regardless of what the “authorities” want.
Self-tapering can be a positive thing because it represents taking action and moving away from the “sick patient” role. I encourage more people taking antipsychotics to consider self-tapering, with or without the support of their psychiatrist.
Report comment
I went to a psychiatrist, for advice to come off, ie taper. He said nothing, he really didnt have any information….. In hindsight, I think he was just ready to pick up the pieces after I tried, I found out the hard way, 3 months tapering is a recipe for disaster…. I truly think that this psychiatrist had never ever, seen anyone get off the medications. And I certainly am not going back, sick of the “”tell me your life story””…… instead of what drugs are you on, ah, no wonder you are nutty! So going to a psychiatrist for information on tapering, is not very useful……….. Join an on-line support group.
Report comment
Regarding ” The main outcome for the study will be people’s levels of social functioning.”
Right.
A set up for failure if you ask me.
I as a mental patient, a scapegoat of my/for my family dysfunction will still exist if I am medicated or not medicated.
My mother and fathers conviction that I am mentally ill (because a doctor told them so) will continue.
If un-drugged I would say more conflict will occur. The whole point of the psychiatric drugs is to get the person stupid , apathetic and easy to control by those in authority.
Those in authority (paying the bills to get a docile patient) are not going to like the outcome.
Report comment
Thanks I agree totally! Another stupid set up to fail study. I feel so sorry for the victims, the patients, who they are going to taper over 6-18 months, after suffering through this, then they will get withdrawals syndrome, around 6-18 months later, and the study will say………. ah tapering doesnt work, all these people went nuts. I think a trial set up for failure, like this, is immoral, unethical, and quite honestly, why??????????????????
Report comment
Had someone of importance decided to adopt long-term nutrient instead of drug maintenance this study wouldn’t even be necessary.
Report comment
Yes, but these people are already on these drugs. Cutting their drugs out over only 6018 months and expect a positive outcome, is absolute cruelty. They will all suffer immensely, If this person, doing this trial, had any empathy they wouldnt do this. Cruel. If there isnt funding to do this over 5 years or more, DONT DO IT. If there is only funding for 2 years ………. DONT DO IT, this is a trial obviously set up to fail…………..
Report comment
So they will reduce the meds over 6 months to 18 months. Sounds like they are purposely setting up a trial to fail. 6 months is way too short a time and will not work. 18 months is also way too short a time to taper someone who has been on high medication and/or on it a long time.
My question, why set up a trial, when it is obvious it will fail? Taper them over 3 years then you might actually get an accurated result. 6 months -18 months? what rubbish, they will all go into Withdrawal Syndrome, and it will get named “”relapse””…………. anyone considering being a part of this trial? dont, taper yourself over 3 years or more.
Report comment
So clear reading the comments on the threads about this on Facebook. The psychs, doctors, bureaucrats, seem so convinced their opinions are correct, never ever having been through the trauma of getting off these drugs ever. It is so clear to pick the comments from the psychologists, etc, who say, oh this will be a great study…… if they think that, I think they need more compassion, and obviously have never bothered to listen to patients who have tapered off the stuff.
Those who have tapered, yes, are very concerned, that these poor patients, will fail, coming off the drugs, as this trial is already set up to fail. I hope to god, patients thinking of joining this trial, think again. We are not LAB RATS> I hate the undercurrent here, that ex patients, or patients are somehow mentally defective. We actually, are quite often, very, very itelligent people, maybe that is why we get targeted, and drugged. Listen to the success stories, of people getting off these poisons, and expecting a good result, from a bad trial, is absurd. PEOPLE TAKE 5 YEARS to successfully taper, expecting a good result from 6 month taper? Absurd.
Report comment
Well I’m in the excited camp because such studies are rare as hen’s teeth – but I’ll be watching out for the post-3 year outcomes, which I trust will follow. And just you look – even the two-year outcomes will show a small group who are already doing well at that point. There’s always variation. If only one of the measures being tracked was coping. I am convinced people actually think and do things to manage their experiences through and following discontinuation.
Report comment