Neuroleptic Taper in a Clinical Practice

Sandra Steingard, MD
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When I started this blog, one of my intentions was to report on my clinical experience in tapering neuroleptics.  I just returned from the Institute of Psychiatric Services meeting in which I presented my poster of the results of my first year of tracking my practice.

Although I have always been conservative in my use of these drugs, I now include in my discussion with patients my concerns about brain atrophy and long term outcome.  This is added to an ongoing conversation I have had regarding the risks of tardive dyskinesia and metabolic effects of these medications.  In my opinion, informed consent is a process, so these are conversations that I have been having repeatedly with patients.  I keep track of who has decided to taper and who had declined.  I analyzed the results of May 20011 to May 2012 and those results were reported on my poster.

During this year, 28 individuals decided to gradually taper. I suggested that we taper by 25% of the initial dose at intervals of every 3 to 6 months.  Seven individuals did not follow this recommendation and abruptly stopped taking the drugs. Nineteen individuals did not want to make any changes.

This table provides information about age, sex, and diagnostic label:

Tapered dose Abruptly stopped No Dose change
Total 28 7 19
Age range 28-76 32-76 28-83
Age- avg. 44 55.12 47.23
Male (%) 19 (68) 3 (43) 12 (63)
Schizophrenia 12 (43) 2 (29) 12 (68)
Schizoaffective 8 (29) 5 (71) 5 (26)
Bipolar 7 (25) 0 1 (5)
Other 1 (3) 0 0

 

What was notable to me in this first chart is that there is a suggestion that more individuals who had experiences that psychiatrist label as mood symptoms (i.e., diagnoses of Schizoaffective disorder and Bipolar Disorder), were more interested in stopping medications (either abruptly or slowly).

I converted everyone’s dose into risperidone/haloperidol equivalents using available recommendations* so that they could be compared.  This next chart shows the doses in May 2011, May 2012, and the ratio of doses on those two dates.

Tapered dose Abruptly stopped No dose change
Dose May 2011 8.22 7 11.03
Dose May 2012 6.24 2.86 11.03
Dose May 2012/ May 2011 0.76 0.41 1

 

In the first year those who decided to taper had about a 30% dose reduction. I recorded outcomes as follows:

Tapered Abruptly Stopped
Death due to natural causes (%) 1 (3.6) 0
Hospitalized (%) 2 (7.1) 5 (71.4)
Transient increase symptoms (%) 4 (14.2) 2 (28.6)

 

Persistent increase in symptoms; patient and physician agree on treatment (%) 3 (10.1) 2 (28.6)
Persistent increase in symptoms; disagreement on treatment (%) 1 (3.6) 5 (71.6)

 

There was a much higher rate of hospitalization in the group who abruptly stopped taking the drugs (5 of 7 were hospitalized).  Two of the 28 individuals who slowly tapered had distress severe enough to warrant hospital level of care.  Out of the group of people who had an increase in symptoms, there was only one of the 28 who gradually tapered in which the person and I were not in agreement on treatment (and that person was not hospitalized). I point this out because some clinicians are worried that if a physician brings up the topic of medication taper or some of the serious concerns about long term outcome, that every one will abruptly stop these drugs, become more symptomatic, and then refuse to re-start them; that has not been my experience.  The people who abruptly stopped taking the medications had done so on multiple previous occasions and I do not believe their decision was influenced by our discussions.  None of the group who choose to remain on the same dose was hospitalized.

I plan to continue to track my practice. I am proceeding slowly so at this point, only a small number have stopped taking neuroleptics completely. I am also going to be collaborating with a colleague who works in another clinic.

Please let me know if you have any comments or suggestions.

*Wood, S, Journal of Clinical Psychiatry 2003, 64: 6630 and Atkins, M, Burgess, A et al The Psychiatrist 1997,21:224-6

 

44 COMMENTS

  1. My comments:
    1) If the people who decided to taper were at 75% of their original dose after a year, this shows how tough it is to taper, and how careful doctors need to be when starting these meds.

    2) It would have been interested to track outcomes on the no change in dose people, too. I would predict they are in between the other two categories.

    3) The group who stopped abruptly regardless of the danger you probably warned them off probably didn’t listen to you much. The group who didn’t want to taper at all who probably couldn’t hear your message either. So maybe the group who did the best, the tapering group, might have improved because that was the group with the best therapeutic alliance.

    4) The death due to natural causes, was that one of those natural 18 fold increase in heart attack risk natural causes that our people have? Fred Baughman says you can tell because people die in their sleep when folks typically don’t have heart attacks. Don’t answer, this is a HIPAA violation probably, but I just wanted to make that point, too.

    5) What did you learn? What do you want to do differently out of all this? What do you think other doctors should do?

    6) How can we can all doctors to track their practices like this? The journal Frontiers in Psychiatry got me to agree that we can do a whole special topics edition on med withdrawal if we can come up with enough researchers and articles. They said they’ll pay for the open access fees and I might put together a Medstarter crowdfunding project to pay for salary support for those of us who would need it to make this project happen. This is my preliminary announcement of this project, call for researchers, and call for articles. Email me at [email protected] dot com.

  2. Based on my experience, the taper you described is too abrupt, even if it is spaced out every few months.

    I myself have been tapering from Seroquel, and I find that even a decrease of 5% or so is enough to cause between 2 and 6 days of withdrawal symptoms. Usually there are at least 3 days of sleep problems which require an over-the-counter sleep aid, and at the higher doses, the dopamine effects of withdrawal were more apparent for a few days, to the point where I felt more emotional, more mentally alive and “on”, and then had a bit of a seesaw effect after that wore off.

    I think it would have been disaster to reduce the Seroquel by 25% at once. I started off on 300 mg, and have had to proceed downwards by 12.5 mg per decrease (the pharmacy cuts my 25 mg pills in half), every 3 weeks, so that I am now down to 200 mg. 212.5 mg -> 200 mg, I felt no dopamine effects whatsoever, and I believe at that dosage it stops hitting the dopamine receptors and starts working on something else (adrenergic or serotonin, maybe – I don’t know how to read the pharmacological data). It would have been an utter disaster decreasing from 300 mg to 225 all at once. My first decrease was from 300 to 275, and that caused enough change to frighten me and slow down the taper.

    I would suggest you strongly consider smaller but more frequent (every 2-4 week) decreases for those patients who aren’t able to tolerate your current taper process, and an anti-histamine or similar sleep aid if there are transient sleep problems. I also suggest you study the pharmacological information that gives an idea about which neurotransmitters will be affected at various doses, to get some sense of specific types of withdrawal symptoms with various drugs.

    I have been able to hold down a job and maintain my life, and have not been in the hospital in almost 2 years, well before I started the taper, when I was being “maintained” on higher doses and had a far worse quality of life. I discovered that below a certain dosage, Seroquel stopped making me feel dysphoric and so mentally clouded and bound up and apathetic, but if I had reduced too quickly (as in the past, because I was so miserable), it could have spelled trouble and hospitalization as the withdrawal would have been too extreme.

    • This was similar to my experience tapering from seroquel. I did 10% at a time, every month or so, going back up in dosage if I became too distressed. I had to cut the pills myself because no-one ever comes off this stuff. Once I clearly understood that my distress was predictable and would subside after a few days I was less afraid of the pain. I just wish I had had other human beings around me who approved and understood the physical and emotional pain I was in. Fundamentally, what is missing is actual human support for people while they are suffering.

      Here’s the irony: The thousand bucks a month that the state was willing to pay for seroquel would have paid the salary of a personal care aide. But we won’t pay for human support, only chemical treatment. What made me decide to stop was that the drugs gave me: bladder dystonia leading to serious, life-threatening infection, cataracts, dyskinesia (still have that fun little issue) diabetes, damage to my forebrain and limbic system, low thyroid and high blood fat. All of these issues except the neuro damage have resolved themselves post withdrawal.

      These drugs are ADDICTIVE. That’s why people aren’t lining up to quit. Doctors must give stronger warnings, with the lowest doses for the shortest amount of time. Before starting the drug there needs to be an exit plan in place. It really says something about how addictive these chemicals are that people prefer to keep taking them even when you inform them their brains will atrophy and they’ll get diabetes. In my experience as a peer supporter, people are continued on seroquel even after they come up diabetic. My diabetes went away when I stopped seroquel. I think you need to think about this fact.

      Thanks for being a scientist and gathering this data. I know you are trying.

  3. That is 3 weeks minimum, I would say. At the beginning there were a few changes that were a week or two apart, but once I reached the point where life was bearable again (less neuroleptic dysphoria), I’ve found that 3 weeks tends to be the minimum time I will allow between reductions.

  4. Sandra, that’s really interesting – thanks for posting it. I also find that no matter how carefully I explain the risks and complications of coming off too quickly, people often tend to rush this process and/or stop suddenly. I would hazard a guess that a number of those you have been working with would have fared considerably better if they had come off MUCH more slowly. I think S.A. in her/his comment above is nearer the mark when it comes to tapering – slowly does it. I find that those who rush the tapering tend to believe any problems are only psychological (rather than also physiological) and it is a matter of mind over matter; hence, I try to clearly explain the changes to the functioning of the brain and the fact that this takes time to (hopefully) reverse.

  5. Hello, Sandra,

    This paragraph confuses me. 7 plus 19 equals 26. What happened to the other two patients?

    “During this year, 28 individuals decided to gradually taper. I suggested that we taper by 25% of the initial dose at intervals of every 3 to 6 months. Seven individuals did not follow this recommendation and abruptly stopped taking the drugs. Nineteen individuals did not want to make any changes.”

    Another question I have, is, what did the patients think would be the outcome of going off the meds? No more symptoms? Going off the meds probably won’t clear up the symptoms in most cases, but it would clear up the side effects of the drugs. The drugs as we know, treat the symptoms, not the cause.

    My son worked with a holistic psychiatrist for about three years who had a rule of thumb that for every three years a person has been on an antipsychotic, it takes one year to taper off. According to this rule of thumb (which may be wrong, who knows?), a one year taper is way too fast for people who have been on the drugs for years. The ironic thing in my son’s case was that he tapered according to the rule of thumb, and guess what? He still ended up becoming symptomatic and back in the hospital. There is a huge desire on people’s part to get off the drugs, which is great, but then what?

    Building resiliency in an individual to make them more resistant to the next crisis, is a job that goes on in tandem with being on meds or not being on meds. So much depends on where the person is at a particular stage of life. One rule of thumb that I do subscribe to, is the fewer medications the better, at the lowest possible dose for the shortest period of time.

  6. Dr. Steingard:
    Thank you for tracking a providing information on results of one protocol for tapering. Both the size of the reductions and the time between them are greater than what some guides propose. I have no science background, but my understanding is that effected neurotransmitters (both directly effected an effected by the “knock on” results) are different for different meds. There is also a large difference in blood plasma and brain blood plasma in individuals thought to be due, in large part, to differences in liver enzymes (most commonly the CYP2D6). The test for the genetic likelihood that this particular enzyme’s level will be much higher or lower than the norm has been available for a while now. That information should be useful in individualizing a taper strategy. I will look for the relevant citation if you would like, but I do recall that the effective levels of abilify, linked to CYP2D6 varied by a magnitude of over 100 times. There are also tables available for different drugs regarding receptor occupancies at different dosages. These tables, from what I have seen, invariably demonstrate certain “cliffs” where a consistent dose reduction results in a much more drastic reduction in receptor occupancy. Crowdfunded’s suggestion would seem a wonderful opportunity to gather information from doctors who, like you, truly want the best for their clients.
    Thank you again,
    Ed

  7. I helped my son come off antipsychotic meds because no doctor was willing to help. To start with he was on 5mg of olanzapine. We tried to go slowly but we did not go slowly enough. He developed severe akathisia and was unable to sleep more than 10mn at a time. After 4 weeks of this he tried to kill himself. Luckily I found him in time and the A&E saved his life. He was put back on meds: 2mg of Risperidone, developed full-blown Parkinson’s and his prolactin went through the roof. Nobody cared. He came off the meds behind doctors’ backs in about three months. I doubt it if he would have made it on his own. The withdrawal symptoms were terrible: akathisia, terrible muscle and chest pains,jerking legs, twichy eyes and mouth,severe panic attacks. He would have been unable to sleep without Zopiclone. I held him tight like a little child to help him through the worst of the withdrawl, telling him: “no, no you are not mad. It’s the withdrawal. Peter Breggin says that in his book. The toxic drugs are leaving your body”. The other thing that helped him was that we sat during the day going over and over the painful things that had happened to him in hospital. The last bit of meds was the most difficult to come off, no doubt about that. He kept shaving off tiny bits of risperidone and it was the only way he could stop his legs from jerking and his heart from going haywire. He has been off all meds for 4 years now and he says that he would rather die than take an antipsychotic again.

  8. My son’s attempts at discontunuation have been unsuccessful. Alix, congratulations to you and your son. I think we need to share both successes and non-successes. My son started his last attempt about a year ago. He was on 17mgs daily of Abilify. The 17mgs was the result of a previous unsuccessful attempt. Prior to that he had been stable at 5mgs. He has been on antipsychotic medications for 8 1/2 years now. From the 17mg level he reduced to 5 Mgs over about 2 months with only minor difficulties. From the 5mg level, he reduced at the rate of .1mgs per week, pausing as needed when insomnia, blurry vision, myoclonic (sp?) jerks, nausea, rapid pulse etc failed to resolve in 4 days or less. With the exception of a month long + battle with extreme malaise, there seemed to be shorter periods required for symptoms to resolve. He took fish oil fairly consistently. He also used GABA and valerian root tea when feeling anxious. Reduction to .9 Mgs seemed to remove his willingness/ability to accept that he was becoming delusional and not getting sufficient sleep. He was no longer willing to accept my input regarding his condition. His pdoc was supportive (somewhat reluctantly) with reduction to the 5mg level, but when he was no longer supportive, my son did not inform him that he was continuing to reduce dosage. At .8mg my son was slowly showing increased magical thinking. His psychologist (a very good one, in my opinion) convinced him to return to .9mgs. My son did this and when this did not stop the growth of symptoms immediately, he added another .1mgs. Another night of bad sleep and he was physically and mentally agitated. He took more GABA, more tea and seemed to relax some throughout the day, but in the afternoon he had a sudden (less than a minute) transition. Without providing detail, he became extemely psychotic and violently aggressive. Responding to my 911 call, six policeman were able to subdue him (barely) and he is now in the hospital. There is more to the story, but this post is already so long that it may detract from others responding directly to Dr Steingard’s post. I hope the information helps others.
    Ed

    • Hi There Ed,

      I don’t know how old your son is, but it can be a ten year roller coaster ride, as it has been with mine. However unsuccessful your attempts have been so far, you and your son have been courageous and you may be still in the middle of the roller coaster ride. Believe it or not, he’s probably learned stuff from this attempt to taper, and when he’s ready, you may be able to support him again. I wish you could have called Michael Cornwell and a half dozen recovered people instead of the police. Perhaps we need to organize our own emergency rescue squads. Have you read/heard Cornwall’s descriptions of holding down folks in violent states? That in his experience, the held person has always calmed down within 60-90 minutes and surrenders to the embrace. His accounts are somehow believable. (links to Cornwall on this site under radio/podcasts and writers)
      Best to you and your son.

      • Diana:
        Thank you for your reply. I will keep my response brief because I don’t want to pull people’s attention away from the original topic. I had not heard of Cornwall, but will check him out. My son is 27 years old. He’s been on the ‘roller coaster” for 8 1/2 years. He is a very large, strong man with training in the martial arts. I did not see a choice, but your suggestion that there may be one will start me looking.
        Thanks again,
        Ed

  9. Sandra, first let me thank you for your research. It means so much to so many. Secondly, if you have not read my piece, “After Seroquel”, I would rather not repeat myself except to say that the result of my withdrawal has been blindness (worse actually; corneal nerve damage, a condition over which many people commit suicide,and fibromyalgia. The real reason for my comment has more to do with health freedom and the UN convention on the rights of persons with disabilities. As much as I appreciate your caring attitude, this paternalism (or perhaps in this case maternalism?)leads you to believe that informed consent is a process. It isn’t. Either people are informed or they are not, and when they are not, this is a violation of their rights. I know I’m sounding black and white, as if I don’t understand what all is involved. In fact, I’m educational director for PsychRights, and what I do is to listen to hundreds of people per year (it has been since 2009). People who have been lied to and whose basic trust in physicians has been irreparably torn by the denial of their right to informed consent.That “process” you may have been alluding to means one thing to you. To another psychiatrist it may mean saying that ECT is “safe and effective” (as was said to me; it isn’t. I lost all memory of years with my young children, and an entire body of music I had composed).Perhaps a better example is the chemical imbalance lie. The rationale was supposedly caring. There really is a bottom line here, and the UN has made it law. We have a right to the truth and the whole truth.Psychiatrists will have to learn to handle their fears and concerns just like oncologists whose patients may choose not to make the decisions they think are best. This will not be an easy transition and the shape of our systems will have to change and adapt, but the denial of basic human rights to informed consent is not a process.

  10. Great post Sandra, so refreshing to see a thread that as David R points out, addresses the practical realities of med’s and withdrawal symptoms.

    I’m curious to know if you give any information on coping with symptom expression when taking the joint decision to taper? In my own journey, finding my way to information on regulating my nervous system, through which “symptoms” are mediated finally allowed me to deal with both the cyclic energies of bipolar disorder, medication dependency and withdrawal.

    I do believe there is a rising tide of new discovery, insight, understanding and acceptance of our unique susceptibility to the traumatic conditioning of the autonomic nervous system (ANS). And in this regard, I would suggest a re-frame of medication withdrawal symptoms, as “trauma exit?” In the comments above, both Ed and Alix point to violent reactions in attempts to withdraw from the chemical straight-jacket of anti-psychotics.

    IMO Its important to go beyond the usual cognitive understanding “symptoms” in these involuntary behaviors, and see them as innate survival reactions, and unconscious expressions of ANS activity? In the examples above of “holding,” what is being soothed is the flight/fight response of the nervous system, which is autonomic and not subject to cognitive control.

    As Alix points out “I held him tight like a little child to help him through the worst of the withdrawal,” giving a clear example of the power of bodily contact to make her son feel SAFE!

    In a lecture in 2003 Dr David Healy Lecture: Pharmacological Python (youtube), points out that historically mental/emotional distress was understood more as pertaining to neurosis or nerves than to a physiological disease and of coarse his views on the successful marketing of non-existent disease entities are well known here on MIA. In my three decade experience, what was most lacking in the doctor-patient relationship was advice on how to cope with “symptoms,” and to this aspect of the mental illness experience I recommend readers to an excellent paper by the US military on “Mind-Body Skills for Regulating the Autonomic Nervous System,” which addresses Rossa Forbes important question about “building resiliency in an individual to make them more resistant to the next crisis.” Excerpt;

    “A systems perspective on health and resilience seeks to establish good functioning and balance across all body systems(e.g.,homeostasis and harmony)through integration of
    beneficial health and mind-body practices. This review focuses on promising integrative practices(also referred to as mind-body
    practices) for regulating stress via the autonomic nervous system (the ANS). The practices reviewed are focused more specifically onintegrative mind-body techniques designed to help regulate and manage stress, emotions and arousal(i.e., strategies for lowering anxiety when it is too high or for increasing arousal when it is too low). Routine pharmaceutical and psychological interventions are often a last resort for helping people manage stress and their emotions. Consideration of the spectrum of mind-body approaches to help mediate and manage stress before it becomes too intense to self-manage provides a preventative approach to strengthening resilience and prevention of psychological health difficulties.”

    http://www.dcoe.health.mil/Content/Navigation/Documents/Mind-Body%20Skills%20for%20Regulating%20the%20Autonomic%20Nervous%20System.pdf

    Signs and symptoms of illness or a natural response to traumatic experience? The most recognized expert on trauma is without doubt Peter Levine, and I owe my freedom from so-called symptoms and medications to his practical methods of trauma release;

    “Trauma resolution is about the conjoined twin sisters of embodiment and awareness. This asset, even beyond its crucial role in regulating stress and healing trauma, is a master tool for personal enrichment and self-discovery. Take your body seriously enough to learn a bit more about its promptings, yet hold it lightly enough to engage it as a powerful ally in transforming intense” negative” or uncomfortable emotions, and so to experience what its like to truly embody goodness and joy. (p, 271)

    All human experience is incarnate, that is to say, “of the body.” Our thoughts are guided by our sensations and emotions. How do you “know” when you are angry? Or, do you know “how” you know when you are happy? Typically, people tend to ascribe a “mental” causation to an emotion; “I’m feeling angry or sad because he/she did this, said this, forgot to do this, etc.” When people learn to focus on what is going on in their bodies in the here and now, they typically report. “My stomach is tight,” or “My chest feels bigger, my heart is more relaxed and open.” (p, 272)”

    Excerpts from “In an Unspoken Voice” by Peter Levine, PhD.

    Withdrawal symptoms or trauma exit? Is this a silly question?

    Best wishes,

    David Bates.

  11. Dr Steingard,

    I just think it is great, and should actually me common practice, to systematically monitor and evaluate your own practice data. There are ways to do it with more intention, but I would suspect that doctors’ beliefs about the process and outcomes of their own practices are meaningfully different than what a systematic appraisal would show.

    Evaluating practice data is a needed next step from just reading the results of a pharma-funded drug trial. It helps doctors get a better sense of how their own patients actually respond, a deeper appreciation for the risks, and in lieu of more experimental studies of tapering, at least some systematic data linked to client characteristics that can be used a guideline (beyond our anecdotal level of data now) and point to where the most productive research should be directed.

    So again, I think it’s great you are taking a serious and systematic approach to at least monitoring what is happening in your practice. I think it is a shame that this is not common practice. It can be highly informative, reduce all sorts of biases, and helps clinicians make decisions with information that is not just based on their belief, beliefs about their past experiences, heuristics, or whim. Though I think insurance companies pool data from their contracted physicians for more nefarious purposes, I think it would also be great for doctors doing similar work with similar patients to at least informally collaborate on their monitoring so that they can question (with some supporting data) what their own effects on treatment process and outcome might be.

  12. Sandra,

    At the risk of being shot by others who are as angry at psychiatrists as yours truly (a few, but not many meet the criteria)…

    I am amazed at your sincerity and openness to learn, with each of your posts. You seem like a caring soul, who is conscientious, always wanting to do the right thing…

    And it shows.

    Be well,

    Duane

  13. I’d be interested in comparing rehospitalization rates for people who continued on their prior dosage. This certainly supports Whitaker’s conclusion that “relapse” is often the result of withdrawal reactions to the medication.

    I’d also be interested in hearing how your colleagues responded to your presentation.

    Thanks for this important information.

    —– Steve

  14. Dr. Steingard:
    Sorry to be so long in getting back to you regarding “cliffs” when titrating off antipsychotics. From my IPhone I don’t see how to copy and paste a link. A quick search of psychiatryonline.org with the terms “mamo” and “relationship between aripiprazole dose and occupancy” will bring you to an article which (figure 1) shows the cliffs for this drug for d2, 5ht2, and 5ht1a. You will notice that going from steady state 35mgs to steady state 5mgs only reduces d2 occupancy from 90% to 78%. At 4mgs occupancy is about 75%. After that point the decline in occupancy relative to decreased dose goes into a nosedive. Acknowledging that there are variations in individuals (please see my comments strongly urging CYP2D6 testing) the information in this report would suggest an entirely different titration schedule below 5mgs than that used at higher dosages. There are similar dose/occupancy graphs available for many if not all antipsychotics. If memory serves the dopamine cliff for Seroquel is around 250mgs. I don’t propose these graphs as blueprints, but only as possible guides.
    Thanks for what you are doing.
    Ed

  15. Sandy, I just saw this.

    Thank you for taking care of your patients by getting them off drugs in a compassionate way, and for doing this study.

    What I’ve seen is people generally tolerate smaller dosage decreases better. A 25% drop is going to flush out those who are sensitive to dosage changes — this isn’t good.

    My suggestion: Trial decreases of 10% per month for 2 months.

    If no withdrawal symptoms appear, speed up to 10% decreases every 3 weeks; further acceleration could be a 10% reduction every 2 weeks, then every week.

    The 10% reduction is calculated on the last dosage. The absolute amounts of decrease get progressively smaller.

    The reason the trial period last 2 months is because, contrary to common belief, withdrawal symptoms sometimes take weeks to emerge and you don’t want to exceed the person’s tolerance for dosage changes.

    The reason the most rapid taper is 10% every week is to allow observation time to slow down if withdrawal symptoms appear.

    The most rapid taper works out to about 6 months.

  16. I am interested in learning more about your observation that patients in your study who were diagnosed with schizo-affective or bipolar disorder complained more about neuroleptic side effects than patients diagnosed with schizophrenia. How may that be explained? What it suggests to me is that, because the underlying symptoms of the affective disorders generally do not include the kind of cognitive and emotional blunting that is characteristic of schizophrenia, schizoaffective and bipolar patients are more likely to experience such blunting as problematic when it is experienced as a neuroleptic side-effect. I would also be interested to know how bipolar and schizoaffective patients among those included in your study fared in comparison to your schizophrenic patients in their efforts to taper off of their maintenance neuroleptics.

  17. I see — there may have been any number of reasons why your patients with mood symptoms were more likely to taper. I would be curious of why, recognizing that it would be difficult to identify any patterns given the sample size. Reasons might include: (1) greater skepticism/lower insight on the part of such patients regarding the need for medication and accompanying lower level of discipline/cooperation; and (2) greater subjective experience of behavioral side effects. In regard to (1) there are no bright lines, but some bipolar and schizo-affective patients’ experiences with mood symptoms may be more prominent than any psychoses they may have experienced historically. This may cause them to doubt (at their peril) any need for medications, as mood symptoms may seem to them less concrete as deviations from psychological stability in comparison to delusions and hallucinations, which can be be more persuasive to many patients as signals of the need for medical intervention. Mood symptoms in the mania range are also generally more enjoyable to patients than psychoses, which might also manifest itself as less interest in medically quelling mood symptoms than psychoses. With regard to (2) many of the studies and much of the discussion I have come across that address cognitive and emotional side effects — and there is far more literature and discussion of metabolic and extrapyramidial side effects by the industry and in the medical community — includes the caveat/observation that the degree to which such side effects are the result of medications is questionable, as they may just reflect the underlying symptoms of schizophrenia. Hence my hypothesis that such side effects are more likely to be subjectively experienced by patients with more prominent mood symptoms than psychoses, insofar as mood patients’ symptoms do not mirror neuroleptic behavioral side-effects. Separately, I am curious whether, all other things being equal in terms of insight, cooperation, etc., such patients are less in need of maintenance (by virtue of their more prominent mood symptoms) and as such more likely to successfully taper. There is some discussion out there about “neuroleptic induced deficit syndrome” that does not seem to conflate patients’ underlying symptoms from the side-effects, but for the most part cognitive and emotional side effects of antypsychotics are downplayed in the mainstream literature. Hope you can shed more light on all of this.

  18. Thank your for having the conscientiousness to track your practice, and to share.

    I WORK from a peer perspective, mostly running educational groups like WRAP Pathways and Hearing Voices groups but also worker trining. I meet a lot of people who want to reduce or come off the meds they take and can’t find doctors who will support them.So again thank you for offering that.

    Many of the people I meet find The Harm Reducion Guide to Coming off Meds by Icarus Project very useful – I did.
    I know a few people who’ve given copies to their Docs, saying “I want you to read this and I’d like you to support me and work with me this way”.and some have found that their docs agree and it works.
    Some find that their Doc doesn’t agree to work with them and, eventually, they do it by themselves.
    In Canada we have an educational program called GAM -Gaining Autonomy with Medications, authored in Quebec by Celine Cyr. It isn’t about stopping but about becoming more aware and making deliberate choices and doing that in steps.
    Your steps of 25% reductions are, I think, [and this is borne out by widespread experience in peer groups ] way too big for many people. GAM suggests reducing one drug at a time and in 10% steps.

    In WRAP we coach people to learn to spot their own signs of wellness and warnings that they might be becoming less well, and need to act. The earlier we learn to spot those signs and to act the more well we remain. We also coach people to learn about the many “wellness tools” that work for them , to have many and a varied, and to use them, [particularly when they spot warning signs, or especially in a preventive way in trying and testing times , like reducing meds.

    It doesn’t have to be WRAP but working this way helps people figure out how they can monior their wellness and take small actions early – make their own interventions. It’s a slow, patient and iterative process.

    This way folks can learn how to handle even being triggered or a drop in meds, . It’s patient work and takes practice – it often takes a few times someone dropping through to becoming unwell before they can figure out what their key signs are and what work for them and they find the things that work best for them. but the basic questions are “what have I learned works for me?”, and “what else can I do besides take meds?”.

    It takes a while to break powerful patterns that have been ingrained and indoctrinated in people’s behaviour and thoughts that say “i’m sick therefore I must need meds” to learn to see it differently and act differently and simply add a stage or two.

    And when coming off that way of operating kicks right back in and is even more powerful – and teh faster the withdrawal the more powerful the effect.

    What I typically say is that I think there is no such thing as too slow: make the next reduction and monitor what is happening – your own signs, wait at least two weeks, likely a month, and sometimes three months before the next step- and use the things you learned that help you stay well, and do as many of them as you can..

    I think there’s too much focus on meds or no meds – its a fals dichotomy. Many people find they’re being judged by both camps of shoulding: should be on meds /should not be on meds. This for me is the real bipolar – its in our society and institutions and health systems.

    The result is that and many individuls spend their lives bouncing between two ideologies and two worlds – one where people tell them they must take meds and the other that they really shouldn’t. That’s not very helpful and it results in many people feeling even more helpless and more sick.

    In reality what works for most is not one big thing but a real world and very personal mix of dozens of small things….and funnily enough the more of those things we have at our disposal , and teh more we use them the better our life becomes.

    Some, many, even most of us, find that eventually the smallest amount of meds we need is zero. Some of us find we’re better off on smaller doses. But we mostly figure out what else we can and need to do to get well and to stay well besides just taking meds.

    I sometimes say that I used to take meds as a substitute for looking after myself – other things seemed more important at the time; or that I took meds so I could get well enough so that I didn’t need to take them any more.

    You could say I just got better anyway, I don’t. I replaced my meds with the hundred or more other things that I do. It’s much harder work than just taking a few pills that someone told me to take. but its way better for me.

    here’s a bit of info from the Great White North that we’ve been collecting and sharing on coming off – it includes a wee bit on GAM. There are many other resources at this site too.
    http://recoverynetworktoronto.wordpress.com/resources/coming-off-medications/

    kevin