the verb “to follow”…

Posted on Tuesday 23 February 2016

About six months ago, I saw a patient on an outrageous medication regimen – one that rendered her literally unable to think. I mentioned her first in blitzed…], later in some truths are self-evident…, and most recently in a story: getting near the ending[s]… shortly after Christmas. I obviously had to get her off the medication to get her mind back. I was worried about withdrawal states, but that turned out not to be the problem – it was the masked Tardive Dyskinesia. It only showed when I tapered the Seroquel. It was severe, disfiguring, and maddening – restless muscles, hand wringing, and constant back and forth jaw movements.  Finally after six months, it has mercifully begun to clear, at least enough to be tolerable. Her diagnosis? Personality disorder, passive dependence, life’s woes, etc. Certainly not Schizophrenia or Bipolar Disorder or anything like that. The mental health center has another more tolerable telepsychiatrist now who isn’t going to be doing that kind of medicating [and they are definitely afraid of me now]. Why mention her when I am writing about Schizophrenia?  To remind us all that Tardive Dyskinesia is very real, still out there, and can be just as bad with Atypical Antipsychotics as with the older drugs. It’s not a virtual threat – it’s painfully real, a show-stopper. Treatment? Don’t get it. Otherwise, symptomatic care and tightly crossed fingers. The good news? In some cases, it very gradually abates with time off meds.
Psychiatric Times
by Allen Frances
February 17, 2016
[note the comment by Sandra Steingard]
Psychiatric Times
by Ronald Pies
February 22, 2016
[note the comment by Bernard Carroll]
Those are four very solid citizens highlighted in red, each an expert in their own right. Their opinions differ, and they’re each candid and clear in what’s written in these two articles and comments. No matter which side of the fence you are on, you’ll know more after reading them than you did before. What they’re talking about is a dilemma – a genuine dilemma. It’s a dilemma for people with psychotic illnesses and those of us who care for them. People who talk about this dilemma tend to polarize and can have a field day with simplification and ad hominem attacks on each other, and in what you will read up there, that tendency is held in check. I congratulate all four for that.

I was in training as the Community Mental Health Movement was running out of money and power. The services were disappearing at an alarming rate. The streets of Atlanta were visibly populated with chronic mental patients and the traditional benevolent agencies were stretched beyond their capacities. We did the best we could, but it wasn’t close to good enough. I left training feeling much like Sandra talks about in her comment. I thought that the best approach to the dilemma about antipsychotics was to use them acutely, then aim for a medication-free life, with medicine always available for exacerbations. I thought that if the resources were available, I could bring that off.

I’m an Internist still, and I learned in that role that one of the more important functions of a physician is following patients with chronic diseases of any kind. You don’t know how important the little ways you can help along the way are until you do it. It doesn’t necessarily have to be frequent, but patients with chronic disease need an anchor – some place where their story is known and they can go even if it’s for a referral elsewhere. It’s a mutually rewarding enterprise. It’s what doctors have done forever, and it’s still the right thing to do. I thought that if I followed my patients with psychotic illness, I could manage medication-free. I also thought, and still think, that psychosis isn’t the only problem these patients have, there’s an underlying disability that often comes with these conditions. There’s a particular brand of supportive psychotherapy that can really help many of them negotiate their lives. I still believe that.

I couldn’t bring it off – the medication-free part.  The recurrences were too unpredictable, too disruptive, too expensive, too disheartening. I was game but surprisingly, in time, the patients weren’t. I did do drug holidays, primarily to be sure TD wasn’t lurking underneath like in the case above. I had some patients who were mostly medication free, but it was way down the line. So personally, I was a person who came to agree that maintenance treatment was the best path, with careful following. What would I do with a patient who refused medications? As Sandra says, It’s not my decision. I’d still follow the patient if they were willing and it wasn’t detrimental.

So what I would add to this discussion is just that – following. We know that many psychotic people have a hard time forming and maintaining long term affiliations, and so success isn’t guaranteed. But I’m also sure that living with the long term effects of these illnesses is usually bigger than just the psychotic episodes, and that periodic contact with someone who knows the condition in general and in the specific case can be a factor for a lot of good. We follow heart disease, diabetes, cancer, hypertension. This is perhaps an even greater imperative. Managed Care doesn’t put to follow on the table because its benefits either haven’t been or can’t be measured, but that doesn’t mean they’re not there. And as to the differences among the four authors above – differences are how dilemmas work until they’re no longer dilemmas. We’re not there yet…
    February 26, 2016 | 4:48 AM

    [Where is everyone?]

    Do you know about a candidate TD drug that’s in phase three trials? I’m not optimistic. They had to change their coding or scoring to eke a result out of phase 2.


    “If you or a loved one suffer from bipolar disorder, mood disorder, schizoaffective disorder, or schizophrenia – and are experiencing involuntary movements in your face or other parts of your body – the Kinect 4 Study may help.”

    “Individuals 18 to 85 years old will be evaluated…”

    The web site and ads for the current trial feature a mixed-media collage of a male patient rigged somewhat like a marionette, with his low jaw resembling a ventriloquist’s dummy’s. It’s disturbing.

    The completed Kinect 3 had a female in the same style. She’s upsetting.

    They do get around to mentioning the role of drugs on a page about TD, where this is the extent of the attribution: It can be the result of long-term or high-dose use of certain medications.

    I understood it to be pretty much independent of dose and duration.

    The drug company is in San Diego.

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