Tapering Neuroleptics: Two Year Results

Sandra Steingard, MD
23
313

As I have described previously, I have been tracking my experience with tapering neuroleptic drugs in my clinical practice. With all of the people I see who are stable on a particular dose of a neuroleptic drug, I discuss the risks of long-term use of these drugs. We also discuss the potential benefits.  This conversation varies from person to person. We take into account what has happened in the past,  how he is doing now, and what she has to lose if her past problems were to re-emerge.  If a person wants to taper, I suggest slow reduction; 25-30% every 3-6 months.  I keep track of who chooses to taper and who does not.  I now have a colleague who is doing the same in her practice.   Together, we are following 112 individuals. We presented our data in a poster presentation at the Institute of Psychiatric Services in October, 2013.

What follows are a series of tables with the data we have collected. We have five groups.  Seventy-two individuals began a drug taper.  However, 15 decided to abandon the taper.  We present the data on the tapering group as a whole and then show the data for the group that maintained the taper and the group who stopped it.  Eleven individuals decided to abruptly stop their drugs.  Since their outcomes were so different, we present their data separately.  Twenty-nine individuals did not want to change their doses.  All doses of neuroleptic are converted into risperidone equivalents following a recommended conversion.

Demographics

 

All Tapers

Taper Maintained

Taper Stopped

Abrupt

Stop

No Change

Number

72

57

15

11

29

Age (avg.)

48.6

48.4

49.3

50.9

51.8

% Male

54.2

53

56.3

36.3

65.5

% Schizophrenia Diagnosis

43.1

45.6

33.3

27.3

65.5

 Dose Reductions

 

All Tapers

All Taper Maintained

Vermont Taper Maintained

All Taper Stopped

Abrupt Stop

No change

Dose 2011

10.1

9.7

6.9

10.2

5.0

13.0

Dose 2013

8.1

7.6

4.3

10.1

3.7

13.0

% Reduction

19.2

17.0

37%

0.7

25.6

0

 

In the chart above, I include data for the entire cohort (All tapers) but I also include the data for those from the Vermont cohort who continued the taper through the two years.

Outcomes

 

All Tapers

Taper Maintained

Taper Stopped

Abrupt

Stop

No Change

Hospital Admissions 2012-2013 (n)

9.7% (7)

10.5% (6)

6.7 % (1)

54.4% (6)

0

Transient symptoms (n)

38.9% (28)

36.8% (21)

46.7% (7)

36.3% (4)

20.6% (6)

Persistent Symptoms (n)

12.5% (9)

5.3% (3)

40.0% (6)

63.6% (7)

3.45 (1)

Transient symptoms are defined as an increase from the usual level of symptoms lasting less than 4 weeks.  Persistent symptoms are those that lasted more than 4 weeks. This was determined by the report of the individual and based on our chart review.

Over two years, in those patients who continued to taper their dose of medication, the average dose reduction was 17%.  The patients in the Vermont clinic were, on average, on lower doses of drug and the overall reduction was 37%.  My colleague working in another clinic was following a fairly large cohort of clients who were referred to her from other clinicians.  Many of them were on multiple antipsychotics when she first met them.  Since they were new to her, she was more conservative in her approach.  The data reflects that on average, this group was on higher doses and the overall dose reduction was less than in the group followed by me.  Seven patients were hospitalized – none in Vermont – but 6 of them continued to taper their drugs; neither the inpatient or outpatients team thought the hospitalization was due to the drug taper.  Close to 40% of the people who tapered experienced a transient increase in symptoms, defined as less than 4 weeks of self-reported increased symptoms. The group who abandoned the taper experienced a much higher rate of persistently increased symptoms (lasting more than 4 weeks) – 40% as compared to 5.3 % in the group who continued the taper.

The group who decided to remain on the same dose were more stable.  They had no hospitalizations and lower rates of transient or persistent increases in symptoms, 20.6% and 3.4 % respectively.

What is missing from these tables are the positive effects of tapering.  At this point, it is hard for us to capture this.  We plan to continue to track these individuals. We are going to track vocational outcomes as well as metabolic data.

What we think is most important is that people who have experienced psychotic symptoms can participate in fully informed consent to determine their ongoing use of neuroleptic drugs. Some people fear that an open discussion of the serious questions regarding long-term use of these drugs will result in many people choosing to abruptly stop taking the drugs. That was not our experience. Many people decided to remain on their current dose.  Another group who began to taper, decided to stop the taper when uncomfortable symptoms recurred.  A small group abruptly stopped taking the drugs but most of them had done so many times in the past.  Although the numbers are small, abrupt discontinuation appears to confer a much higher risk of increased symptoms and hospitalization.

We plan to continue to track these individuals.  We hope others may do the same.  There is much that we need to learn about this process.

* * * * *

Patrick J. Bonavitacola and George Bud Vana assisted me in collecting data, creating spreadsheets, helping with statistical analysis, and creating tables.  I am grateful for their contributions.

23 COMMENTS

  1. Thanks so much for sharing these data and anecdotes. There is no getting around the fact that the lessons of my example may be interpreted in different ways, depending on one’s perspective and investment in it. Still, in significant ways, my example seems consistent with your results.

    My first episode, cannibis-induced, was in 2001, when I was hospitalized but discontinued treatment with neuroleptics soon after discharge. I had been diagnosed with bipolar I. My second in 2003, also cannibis-induced, also resulted in hospitalization, after which I was willing to remain on what was later described to me as a sub-therapeutic dose of a neuroleptic. My third episode, 2004, cannibis-induced, resulted in hospitalization, and upon discharge I agreed to remain on a very high dose of the neuroleptic. I was diagnosed with schizo-affective disorder at that time. The years between 2001 and 2004 were the very worst of all of my years professionally and socially. Following the third hospitalization, I stopped taking one illegal drug (which I had started taking regularly only in about 2000) and resolved to take another legal one, a neuroleptic, plus a mood-stabilizer. I’ve recounted in other posts my experiences since staying on the neuroleptic. In short, between 2004 and 2010, I accomplished more professionally and socially than ever before, which in my case was a substantial achievement. I re-acquired during that period and continue to work in what many would view as in a prominent professional position. However, in the years leading to 2010 I became increasingly disturbed by what felt like a cognitive and emotional deterioration that had earlier been more subtle but had grown to become unmistakable. Negative professional and social consequences had ensued. As previously described, an attempt to switch neuroleptics to reduce side effects in 2010 had failed miserably, causing debilitating anxiety and panic attacks and culminating in what felt like depression. I returned to my previous state upon resuming the original neuroleptic, but not before the emotional instability had dealt a terrible blow to my marriage. In 2012, I began a new position, in part to seek anonymity again, and I began to taper off of the neuroleptic in January of 2013. I gained the courage to do so in large part as the result of reading Whitaker, your posts, those of others on the site, and those of my fellow commenters. I had fired my psychiatrist and was re-diagnosed as bipolar-I in January, and told that the schizo-affective diagnosis was a terrible mistake. As previously reported, the positive effects of tapering have been, just, extraordinary. Positive cognitive effects, and positive emotional effects, consistent with what I’d read in Breggin and Whitaker. Among other subjectively perceived benefits, it is as if all of the extra work I had to do cognitively and emotionally to try to embody myself has developed musculature that make me stronger in those ways on lower doses. That is, stronger than would have been the case had I not been fighting, in vain, to break through the fog all of these years. I say this not at all to suggest that the drugs were good for me in this way, but to underscore the degree to which the side-effects truly were debilitating (apart from the metabolic side effects that big pharma must now admit after having paid billions for lying about it). I had come down 1/3 by September, and reduced to 1/2 in October. Immediately thereafter I entered into a period of incredible intensity at work, and, upon experiencing a familiar sense of agitation and exuberance, I very reluctantly agreed to return to the 1/3 down dosage a few weeks ago. I agreed to do so on the condition that my doctor would support resumption of the taper in a short term, and he advised that this was always his intention, and so I’m now counting down the days. I find it at once chilling, appalling and despairing that I can discern the deterioration in cognitive ability resulting from my return to 1/3 from 1/2. Meanwhile, after only one year on the job, I’ve been promoted to an even higher level of authority, after having functioned easily at my highest level in my professional career. This fact, one must acknowledge, is more objective in nature.

    So, I enthusiastically support the practice of working with a psychiatrist on a slow taper but — if desired by the person in question, with full disclosure — a persistent one. I also support, from personal experience, a willingness on the part of the person to move backwards, in extraordinary circumstances like those I felt I was in. Circumstances in which so much was at stake, that a minor setback — to guard against a far more damaging one — was well worth it. But only on the condition that the psychiatrist doesn’t do what psychiatrists so often accuse us of doing: abruptly stop the taper (as opposed to the medication) based upon a premature conclusion that not to do so would end badly. Without this understanding, I would fire my psychiatrist.

    I am a sample size of one, but it must be and is is enough for me.

    Thanks again for your very important work.

    • Lately I am hearing more and more of these stories, and this story moves me too, even though it sounds as if this person managed better than most to avoid the worst of it.

      Although my own experience with psychiatry was quite horrible (a label of schizophrenia and shock treatment at age six, the rest of my childhood spent in a state hospital), I consider myself lucky not to have been drugged (only because the drugs did not yet exist when I was incarcerated). But the most horrible psych drug stories to me are from other children who were started early. It is routine for young girls to have their endocrine and reproductive systems seriously damaged, and of course psychiatry has nothing to say about this.

      How many millions of people will have their lives ruined before our society puts a stop to this?

      • Dear Ted,

        I so much agree with you! I wish antipsychotics never were invented! How is it possible that medicine and psychiatry can only harm to heal? Why is it that they abandoned the simple principle that was known by the masters of antiquity like Hippocrates, that mind and body heal themselves when the cause of the illness is taken away and therefore doing harm was to be avoided at all costs?
        Why is it that they (literally) took away the soul out of psych-iatry (and the patients)? (Psyche meaning soul).
        Why have psychiatrists become destroyers of mind, feeling and body?
        Is mental illness caused by dysfunction of the brain, or is it a result of sensitive (often young) human beings that have difficulty to live in and digest the cruelties of a sick world en society?
        Or is psychiatry (as institurion) itself the result of a brain dysfunction, not of the patients but of psychiatrist themselves?
        Could be an interesting question and theme open for discussion!
        Seeing mental illness only as a result of a brain disease seems to me a sign of narrow mindedness and thus brain (and heart) dysfunction!
        Psychiatrists should be screened before accepting them to “treat” others! The final exam: a brain scan and no graduation if the parts in the brain that show (not cause) compassion, love and open-mindedness are not lighting up!
        That would make loving and open-minded people a lot richer than is now the case in the world, that’s for sure! Shouldn’t that be the standard for society as a whole, but especially for the medical profession and psychiatry?!
        Who knows? Could become an obligatory test in the future for many professions!

        I, myself am in a medical/healing profession and I am horrified to see how our daughter that suffers from delusions and voices, that clearly are trauma-based, is totally drugged against her own and our will, which (unnecessarily) has made of her a severe physically, emotionally and mentally disabled person at the age of only 24. She is in the hands of the (Dutch) State and we have no influence whatsoever on the kind of treatment that they are giving her. Anti-psychotics have only worsened her mental state without any positive effect on her delusions and voices.
        However, that doesn’t motivate the psychiatrist to diminish her medication, despite of the fact that she was wonderfully recovering on a minimum dose of antipsychotics! Brain dysfunction on the site of the psychiatrist (and lack of good will)! Dutch law supports the never proven paradigm of neurotransmitter imbalance and thus the need for brain (dis-) balancing drugs. Not being able to digest the harshness of life makes you thus an enemy of the state and maybe rightly so, but with nowhere to run to.
        Thank God we have people like: Peter Breggin, Romme & Escher, Bertram Karon and many others and studies like this one that in the end will force psychiatry to change their way of treating patients.
        With kind regard,
        Valentine

  2. Ted,
    Wouldn’t it be nice if the very hospitals,rehab centers that young people enter cared enough to expose why mind-altering drugs (e.g. PCP, cannabis, ‘shrooms) which alter the young brains( most susceptible < age 25) and cause psychotic sxs: thus labeling with such diagnoses somewhere on the schizophrenia spectrum which thanks to Big Pharma now includes " bipolar one" . Yet, none of these dx ( except for insurance coding purposes) legitimately, per " the DSM bible" IF a chemical substance is found in the tox report" applies. Of course, but " the Busi of Psychiatry" has morphed to snag multiple victims. N.I. appears to be one of the more fortunate victims, lucky IMO to have survived the several hosp ordeals, then the supposed error in the schizoaffective dx.
    Having watched how my son's mind, age 23, when he had his FEP, again like N.I. ( under the influence of cannabis) suffer such a horrifying experience, but made a catastrophic one because his family asked him to enter a psych hosp ( wrongly assuming he would be counseled, supported, and helped to digest what factors threw his brain into psychosis). Nope! The mentality in ? all psych hosp is label 'em, drug 'em, warehouse 'me, dump 'em- all true, saw it happen twice to my son, again testing + for cannabis. Isn't it time that society begins to accept cannabis IS a mind-altering drug and start an interactive website educational campaign like the Canadians began in 2011: the cannabis-psychosis link. Would N.I. and my son had not had more psychotic "episodes" had they been educ their brains were susceptible? Could N.I. have avoided long term psych drugs as he now so valiantly continues to taper down?
    I applaud Dr.Steingard for her Herculean efforts to I) first, recognize the research Bob Whitaker and others started which is making p-docs ( the ones who have a conscience) accountable for the mess MH is in 2) to take on studies like this one to truly help ppl find ways to reduce their neuroleptics. My wish: society would accept how mind-altering drugs can and do alter brain changes which cause catastrophic results. Especially, when a person gets admitted to a locked unit, truly help educate the person, involve the family/friends since anyone in psychosis is already dealing with too much trauma, find out what kind of emotional &/or physical trauma precipitated the break- likely the cause of using mind-altering drugs pushed them over the edge… In my son's case, despite me waving the clinical research studies " the experts" denied pot could cause psychosis, both '09 and '11 hospitalizations. "Your son is JUST a recreational user" instead of sending him to a rehab center after "the system " dumped" him once the insurance refused further stay. We naively believed " the experts" despite I had the answers all along, talk about the sadness I live with now.

    N.I- you were stronger, much stronger than my 25 y/o son, who came back to " normal" 10 wks after his mind went into psychosis each of his two " episodes" ( NO family hx of ANY severe MI so all the studies linking genetics think again), but the stigma and the horrific side effects of mood stabilizers, neuroleptics ( though he successfully weaned off of all legal meds) and was " clean" for 7 months my son didn't have any fight left as his spirit broke along the way. For a young man who had never shown ANY signs of depression, one of the most social souls on earth, loved by everyone who met him…..how does someone who should have had the world as his oyster take his life at age 25? Sadly, his medical records which I have now scoured, along with a very CARING and competent p- doc who reviewed my son's chart and suggest " criminal charges should be brought" too late for my son. He's dead. My son, and his family, desperate to seek proper treatment, and support, but that never happened. At least this kind of study Dr. Steingard discusses are a beginning. And especially moving MH into programs that educate, offer alternative ( non-drug or minimum drugs) approaches. My oldest is gone, but surely he didn't/ shouldn't have died….. Yes, Ted, we both know there are HUMANE ways to help ppl who out of nowhere suffer serious mental challenges in life. Too bad it came too late for my family.

    • larmac,

      I am so sorry to hear about the loss of your son. I can’t even fathom what you and your family must have gone through and my heart reaches out to you. I want to say to you that I fully acknowledge and agree with Ted’s observation that luck has played a very significant role in helping my story to, thus far, remain a positive one. It’s very largely because of my elite education, which not everyone has the benefit of, that I was given another chance to succeed in my career. Without it, my life — at least that aspect of my life — would have remained in a shambles in many respects, which accompanied by more negative social and other negative consequences. I also do not deserve the credit you give me for being “strong.” When I used the word “strong” in my account, I meant only that fighting emotional and cognitive blunting, once it has been alleviated, seems to have improved my ability to feel and think, because I am making an effort to do more without needing to. I was on a dose that was on the boundary of “therapeutic,” and then for the last year or more preceding the setback in 2010, I convinced my then psychiatrist to put me on a lower “maintenance dose.” This coupled by the fact that my (let’s call them, for ease of communication) “delusions and hallucinations” were much less significant than my “manic and depressive symptoms”. Which is quite different than the in many ways more challenging experiences of many on this site who have experienced so called “symptoms of schizophrenia.”

      Any of us who have, for whatever the reasons, ended up in psychiatric treatment or in the throes of a debilitating psychological condition must be stronger than most in some ways. This is so even once out of the throes, because of the devastation that these experiences can have one ones lives. And that includes people who are no longer here to fight the terrible and olympian battle any longer, for whatever the reasons. Including your son, who has earned my respect based upon your story.

  3. Sandy

    many thanks indeed for yet another excellent piece. It is so important to mobilise the discussion about does reduction strategies, both for people on neuroleptics, their families and psychiatrists. It may be the case that it is difficult for your data to capture the positive benefits of tapering, but the other side of this, given the evidence elsewhere, is that it strengthens the arguments for avoiding the use of these drugs, and certainly their long-term use.

    You make a really interesting point about your colleague’s ‘more conservative approach’, related to the the fact she had not been involved her patients’ care that long. This points to something that evidence based medicine completely overlooks, and that we (Pat Bracken, Sami Timimi and twenty six others) drew attention to in our special article in the British Journal of Psychiatry a year ago. This is the importance of the quality of the therapeutic relationship – the issue of trust and understanding between patient and doctor – in how medications are used. It takes time and hard work on both sides of the office to establish this, something that your colleague clearly recognised.

    Your post really reminded me of what I spent most of my time at when I was a clinician – doing my best to encourage people to consider dose reductions. It is deeply rewarding work; I just wish I had been as well organised as you and your colleagues in documenting it!

    Keep up the great work.

    best wishes

    phil

    Bracken, P., Thomas, P., Timimi, S. et al (2012) Psychiatry beyond the current paradigm. British Journal of Psychiatry, 201:430-434.

  4. My psychiatrist wanted me on long-term Risperdal and completely minimized the risks to me. I know that Risperdal isn’t the answer to preventing mania and accompanying psychosis. The answer is not to get depressed and, if I do get depressed, not to seek medical attention.

    I dumped the Risperdal in April and have had absolutely no return of my symptoms. I’m now in the comical position of having to sit through these appointments while the shrink attempts to “prove” that I’m well only because I’m drugged. Not sure exactly when I’m going to tell him the truth. Maybe not for a couple of years so he can’t just say “You were lucky.”

    In between psychiatric nightmares (the first lasting 3 years, the second lasting 10), I had a happy, fulfilling and productive 13 years, all of which time I was med-free. This has yet to be explained to me via the neurotransmitter imbalance model.

  5. One of my major concerns is all the little children put on antidepressants (and ADHD drugs), whose adverse effects were misdiagnosed (according to the DSM) as bipolar. A similar issued to what’s discussed above, bipolar diagnoses being given when a drug induced diagnosis should have been made. I know this is a much too frequent medical error in psychiatric diagnoses. And this is essentially what happened to me. I had adverse reactions and withdrawal symptoms to Wellbutrin, given for “smoking cessation,” worsen by a major drug interaction with Ultram, and ADRs to Voltaren (the latter two drugs given due to a “bad fix” on a broken bone). The ADRs from this bad drug cocktail were misdiagnosed as bipolar.

    I was then given Risperdal, which resulted in a, confessed in my medical records, “Foul up,” because antipsychotics given to a non-psychotic person to cure a bad reaction to antidepressant withdrawal can CAUSE psychosis. It happened to me, it was terrifying how sick Risperdal made me. But the psychiatric industry from my experience does not realize that, just like the typical antipsychotics, the atypical antipsychotics can CAUSE psychosis when given to a non-psychotic person, merely suffering from ADRs (primarily from) an antidepressant. And I’m sickened that, essentially, what happened to me, has happened to over a million children, thanks largely to Dr. Joseph Beiderman.

    I’ve been drug free, almost completely, for seven years. And I’m quite certain most the children and adults who had ADRs from antidepressants (or any drug) misdiagnosed as bipolar might be able to be weaned completely off ALL meds. Of course each person must be evaluated and LISTENED to individually. But I’m quite certain the DSM clearly states that drug induced illnesses are to be differentiated from bipolar for a good reason, and it’s heartbreaking millions of American children, particularly, have been misdiagnosed in this manner.

    I understand it’s not profitable, but truly, the psychiatric practitioners have a moral obligation to confess these medical errors to their patients, and actively work to decrease the harm the are doing to their patients. I had to research medicine myself, and that just points out the shameful state the mainstream American medical system is in. But the good news is, when a patient medically explains how they were made sick with drugs, decent subsequent doctors do express disgust at the medical covers ups of the psychiatric misdiagnoses.

    I hope the psychiatric industry starts to wean all those who’ve been misdiagnosed with a serious DSM disorders inappropriately, due to prior ADRs and/or withdrawal symptoms from drugs – pharmaceutical or illicit – soon. “First do no harm,” that was your promise to ALL your patients. You’ve abused your trust, and you need to try to correct your mistakes. And the magnitude of the American psychiatric industries’ iatrogenic errors against helpless children is “almost unfathomable.”

  6. This is my experience while watching my son tapering of antipsychotic medication: he found it impossible to come off olanzapine, no matter how slowly he tapered because of extreme insomnia and akathisia which lead to a breakdown and rehospitalisation. The psychiatrist in charge of his case moved him on to Risperdal on which my son had severe side-effects but at least he was able to come off it in about six weeks and he hasn’t been on any medication since- for 5 years now. His life has been ruined though by his experience and the labels which follow you thanks to your medical notes.

  7. While I applaud your concern about the long term impacts of Antipsychotic medications, such as Diabetes, Hypertension, Elevated Triglycerides, and others, I am concerned about a couple of areas mentioned in your assertions.

    For one, I do not see any indications that you have included ANY confounding social, economic, or other situational factors into the conclusions that you draw from your data. Have you looked at the totality of the environments that your subjects come from? Did you include pre-existing conditions as an indicator of what is acceptable as a “quality of life indicator”? If someone suffers from a heart condition, for example, the risk of elevated blood pressure makes the use of any medications that elevate blood pressure a possible absolute counterindication for use of Antipsychotic meds known to cause such elevated levels. However, if the person shows no indication of such risks, and there are familial, economic, and social benefits that could be included in your metrics for taking Antipsychotic medications, how do you account for these in the interpretation of your data?

    It really does not seem fair to discuss outcomes for patients solely in terms of self-reported symptoms, and not include an entire axis of other factors impacted by the symptoms most effectively reduced by some of these Antipsychotic medications. That tends to reduce the person to a series of numbers, rather than a complex and social being that has the right to decide whether the risks and even deleterious potential outcomes might be more valuable to them than simple reduction of risk of side effects.

    I have no love or personal interest in the pharmaceuticals in question. I think your pursuit of their advertising and coercive practices is very valuable. It just seems like your expression across the board of minimizing the value of Antipsychotic medications fails to look at the totality of circumstances that people find themselves in. And, using employability or other generic mainstreamed metrics as a measure of “quality of life” is not only culturally insensitive, I am not certain that it is economically viable in an age where we are seeing a necessity to move more and more towards socializing medicine as a necessity of public health. (Yes, I am an advocate of Single Payer healthcare, admittedly).

    As someone who has a Chronically Depressed son, a wife with an extremely severe presentation of Bipolar Disorder Rapid Cycling Mixed, and had two parents afflicted with psychotic disorders, this is VERY PERSONAL to me. I am working on compiling information for both a book and other information which I am hoping to present with some professional collaborators in the Mental Health field as a more socially aware and more personalized approach to both diagnosing and treating Mental Health issues, I find that what I saw in your article in the December 9, 2013 Washington Post, and what I see here send off some alarms for me. How can we consider that getting a job is any indicator of relief of distress from the most damaging impacts of Psychosis? I think that you have failed to consider many factors that are not part of common metrics, such as the dignity of self determination and the benefit of situational awareness in a person’s life. That a person can operate machinery or drive a car to earn a paycheck is not really proof that they are enjoying a higher quality of life. There are actually ways to factor in the idea that a greater sense of personal well being, spiritual fulfillment, greater closeness and quality of personal relationships, and other less readily acknowledged factors, are really important to lots of people. I know they were to the many people I have known that felt alone and isolated because of their psychosis or delusions. Perhaps you might enlighten people like myself how simply tapering off without considering the entirety of environmental and situational factors is not an oversimplification. Thanks in advance.