Over on 1 boring old man (who actually is not all that boring), Mickey is writing about a post of Thomas Insel's blog yesterday -- Insel writes about how some patients do better without long-term anti-psychotic treatment. Dr. Insel is the Director of the National Institute of Mental Health.
So perhaps you've heard that people with certain mental disorders need to stay on their medications forever. Certainly, some do -- they stop their medicines and each time they try that experiment they end up sick --- in the hospital, in jail, on the street, or simply festering in the basement. But some people stop their medicines and they don't get sick, so clearly, not everyone with a given diagnosis must stay on medicines for life, but we don't have a way of knowing who needs them and who doesn't. We know risks for populations (maybe, to read Dr. Insel's blog, we don't know them as well as we thought), yet we know nothing about a given individual until a doc stops the meds or the patient goes off them on their own. We also know that the medicines have risks. How much risk? Who knows. Here, one figure sticks: of those who remain on an older generation antipsychotic (Haldol, thorazine, prolixin) for 25 years, 68% will get tardive dyskinesia. And that figure doesn't say anything about dose.
So read Dr. Insel's post: Antipsychotics: Taking the Long View.
And read 1 boring old man's post: surprise...
And I'll copy a part of Dr. Insel's post here:
After six months of symptomatic remission following antipsychotic treatment, patients were randomly assigned to either maintenance antipsychotic treatment or a tapering-off and discontinuation of the drug. As expected, the group that stopped taking their medications experienced twice the relapse rates in the early phase of the follow-up. But these rates evened out after a few years, as some patients in the maintenance group also stopped taking their medication. Most important, by seven years, the discontinuation group had achieved twice the functional recovery rate: 40.4 percent vs. only 17.6 percent among the medication maintenance group. To be clear, this study started with patients in remission and only 17 of the 103 patients—21 percent of the discontinuation group and 11 percent of the maintenance group—were off medication entirely during the last two years of follow-up. An equal number were taking very low doses of medication—meaning that roughly one-third of all study patients were eventually taking little or no medication.
For me, there were three remarkable results in this study. First, the groups did not ultimately differ in their experience of symptoms: about two-thirds of each group reported significant improvement in symptoms at seven years. Second, 29 percent of the discontinuation group reported that they had also achieved a healthy outcome in work and family life—a number that should give hope to those struggling with serious mental illness. And finally, antipsychotic medication, which seemed so important in the early phase of psychosis, appeared to worsen prospects for recovery over the long-term. Or, as Patrick McGorry said in an accompanying editorial, “less is more.”2 At least for these patients, tapering off medication early seemed to be associated with better long-term outcomes.
I had difficulty discontinuing an antipsychotic, and although I'm back on it(for now), I don't see the difficulty in discontinuing as a sign that I need it. I see it as an indication that I had difficulty discontinuing it and may need to decrease it more gradually next time. (I should add that when it was discontinued, it was under my doctor's care and with his reluctant blessing. I didn't discontinue on my own).
I support those who wish to take it for life, but I don't think that's the right decision for me. I think all of the metabolic risks of the drugs put my life in greater danger long term. For others, that may not be the case.
You might want to visit http://survivingantidepressants.org/ and look for tips on tapering various antipsychotics very slowly that you can share with your doctor. Don't be discouraged by the name of the site as many people have come there who are on antipsychotics including a newly appointed moderator who is helping his son get off of them who had had previously difficulty like you have.
It is not beholden to any commercial interest and depends entirely on donations.
Totally agree that difficulty in discontinuing a medication has nothing to do with whether someone needs it or not. Many people have sadly stayed on antidepressants for years due to what I feel is this misconception. And sadly, it looks like the same situation is occurring with antipsychotics.
By the way Dinah, it sure sounds like Dr. Insel has been reading Robert Whitaker's book, Anatomy of an Epidemic. I guess that makes him anitpsychiatry. :)
All jokes aside, it is great that this discussion is occurring. It is way overdue but better late than never.
There are clearly patients who can't go off antipsychotics and do well -- we know this because they don't care about the studies, stop their medicines, and get sick and hospitalized, over and over and over again. And there are clearly patients who stop their medicines or recover without ever taking them. The issue that gets raised is how do we figure out who will respond to what medications and how long they need them for at what dose. I've never seen it said anywhere, but I often tell patients "It takes more medicine to get someone well then to keep them well." (~ShrinkRapDinah, circa 1996, repeated over and over).
Clinically, part of the issue is that those patients who stop their medicines and do well, don't come back, so we don't always see them. I have a few people who stop some/all of their medicines and do keep coming for therapy, so I don't believe everyone needs meds forver, the problem is one of RISK. So I agree with the tactic of trying to lower medications slowly and then going back up if problems occur. Problems can be not feeling well in any number of ways (often trouble sleeping) or the return of frank psychosis. The issue of RISK is one the patient has to decide -- if an episode of illness consists of sadness and sleeplessness, so be it. If an episode of illness consists of months of hearing voices, an inability to function, or an expensive and unpleasant hospitalization, many patients say "I want to stay on my meds, at these doses, and I don't want to take any risk of lowering them." My job is explain the risk (as I know it) not to live other peoples' lives for them.
AA: Anti-psychiatry is all in the tone. I'm all in favor of questioning our assumptions, and these issues are not in any way unique to psychiatry. Think about that beloved food pyramid, hormone replacement therapy, and here's an article about the assumptions we've made for decades about salt consumption: http://www.kevinmd.com/blog/2013/07/salt-diet-high-blood-pressure-evidence.html
Is it really in the best interest of every cancer patient to offer them aggressive treatment? And how about our current vitamin D craze: someone please show me the evidence that exogenous vitamin D administration lowers the incidences of those disease states associated with low serum Vitamin D levels? I know, you'll look up that information as soon as you finish working on your lawsuit against the makers of the medicines that were supposed to strengthen your bones to decrease your risk of fracture, but instead disintegrated your jaw.
When I went off psych meds, I looked up taper schedules on drug company websites, then I went a lot more slowly than listed. I had no reactions going off the meds, perhaps because I did it extremely slowly. I used a razor to slice pills into tiny fragments as needed by my schedule.
Also when reading above, what strikes me is the word "diagnosis". I would guess that some of the diagnoses are wrong and some are right, and therefore you are looking at a mixed population in the study group. Maybe everyone labeled Bipolar is not bipolar. It is something to consider, anyway.
Also, the above article seems to refute the concept that once a person has had a single episode of mental illness that they will forever be mentally ill. The majority of psychiatric community seems to think that a person can't have an episode of mental illness, but instead think.. once mentally ill...always mentally ill. If you had an episode of mental illness ten years ago, and no symptoms since, then you still ARE mentally ill and will ALWAYS be mentally ill. I think this belief is wrong, but this belief is now being codified into government registries of peoplle who have been hospitalized and into gun laws.
Side-effects that patients experience are frequently discounted by psychiatrists, also. I notice that in the article, the only side-effect discussed is tardive dyskinesia. I experienced serious memory loss and difficulty in reasoning from psych meds and these side-effects are discounted as being unimportant or "nothing" by many psych professionals. It is not "nothing" to lose a significant percentage of cognitive functioning. In my case, nobody told me what any side effects might be. I was experiencing choking and near accidental swallowing of my tongue and problems keeping my legs still and I had no idea these were drug related changes. I thought at the time that somehow I had "forgotten" how to swallow my own saliva, and I kept trying to not be so clumsy. Eight years later, during a movie last Wednesday night, I almost was unable to breathe after I once again nearly choked on my tongue and saliva. There was no warning. I was not "doing" anything. Just sitting there, and suddenly I was choking. I never had that happen before psych meds, and it may seem like "nothing", but I got saliva in my lungs, and for a while was unable to draw a breath, and it was very scary. It was nothing to those who prescribed psych meds for me.
I second what Dinah just said. The situations of patients can be vastly different and complicated by myriad factors. For instance, what is the degree of mood disorder, anxiety, and physical factors? What age is the patient, is he using substances in some form that totally changes the risks, what is his social situation and support system, and what expectations are there from his own life goals and desires?
A good working relationship between doctor and patient is very important. There are no cookbook answers. I know alcoholics who have achieved decades of stability and abstinence in spite of taking several milligrams of clonazepam every day, and adults whose depressive episodes led to years of disfunction, loss of job and relationships, and almost ended life, so that the danger of relapse is very great. And every clinician has had patients who, despite numerous inquiries and requests, completely hid parts of his life that were crucial to understanding and helping him.
So I found the post thought provoking and worthwhile.
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