Professor Joanna Moncrieff on getting off meds
As a mother of a 46-year-old son who has been on Clozapine for 25 years, I listened intently to the ISPS sponsored webinar (September 19 th , 2024) in which Dr. Joanna Moncrieff reported on the results of the RADAR study that she directed. RADAR stands for Research into Antipsychotic Discontinuation and Reduction. The study began in March of 2020 and ended in March of 2022.
I like Dr. Moncrieff. Even though she starts out by saying that antipsychotics are some of the most dangerous medicines around (side effects include brain shrinkage and higher incidence of diabetes and cardiovascular issues) she goes on to say that they can also be helpful. And toward the end of the webinar even says that some people with bipolar disorder would do well to be on antipsychotics rather than lithium because it is so toxic. Dr. Moncrieff is comfortable in the gray area so I trusted her.
The study ended up with about 200 participants equally divided between those who reduced their antipsychotic medication and those who stayed on their medicines at the same dose the entire time. The group who reduced or in some cases came off their antipsychotics during that 2-year time period, had twice the relapse rate. Dr. Moncrieff was hoping that the slower reduction of the medicines in the study would result in fewer hospitalizations than an older study in which people were taken off their meds cold turkey but this was not the case. When asked if there would be situations in which she might want the patient to stay on their antipsychotics their entire life rather than reduce, she said yes. And she also said that there were people in this study who were able to successfully reduce or even go off their antipsychotic medications altogether.
Here are a few direct quotes from Dr. Moncrieff:
“I think antipsychotics are some of the most unpleasant and
dangerous medications out there….”
“That’s not to say that antipsychotics aren’t useful in some
situations and I think that they are. I think they do dampen
down and reduce the intensity of acute psychotic symptoms.”
“At 24 months there was no difference in the social
functioning scale between people who had been randomized
a dose reduction and people who had been randomized a
maintenance treatment. We had hypothesized that maybe
we would find a difference.”
“We looked at relapse in several ways. The easiest way to
look at it is just the number and proportions of people who
had a severe relapse and were readmitted to hospital and
we found that that was about 25% at the 2-year mark in the
antipsychotic reduction group versus 13% in the
maintenance group so an almost two-times risk of having a
severe relapse but still you could say the majority of people
didn’t have a relapse.”
“Overall, people having any relapses: there were 41.3% in
the dose-reduction group and 22% in the maintenance group
so again the dose-reduction group are experiencing about
twice the amount of relapses.”
“So, just to summarize: The 2-year results showed an
increased rate of relapse in people who had been
randomized to antipsychotic reduction compared with
maintenance treatment.”
“It was quite disappointing to find such high rates of severe
relapse even though we’ve been reducing medication
gradually because our rates of hospitalization were actually
the same as the rates found in the big meta-analysis of
antipsychotic reduction trials by Stefan Leucht published in
2012 which was an analysis of studies that had mainly taken
people off abruptly, just overnight. So, it was surprising that
we didn’t find lower rates of relapse. It suggests that this sort
of gradual reduction that we’d implemented either wasn’t
gradual enough or maybe it just doesn’t actually prevent
relapse.”
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The word “relapse” and even the word “hospitalization” sound casual enough but during our son’s last relapse/hospitalization, he was put on 9 medicines, most of which he has spent the last 2 years tapering off of with plenty of suffering to go around. The fact that 41% of the RADAR participants who tapered down or completely off of their antipsychotics relapsed is horrifying and because it has been our experience, our reality, also oddly reassuring. The
truth is on the table. Our son talks a lot about being in prison. He is.
