This question is for all of us, including myself, without much judgement. There are those who quit their medication and are fine, those who quit and are not fine, those who want off but are worried about withdrawal (which can trigger an upswing of serious symptoms again), and there are those who want off but their doctors disagree.
For those with any diagnosis related to psychosis, one thing you’re told especially is to stay on your meds. The reasons for why are a little less clear. This is what research says.
I found two articles on this topic, both Meta-Analysis (they’ve collected a group of studies and used statistics to quantify the average results of all the studies)
They both discuss studies assessing whether long term antipsychotic treatment maintains sufficient and healthy remission for individuals experiencing first-episode psychosis. There are two conclusions you will often find when searching databases for this kind of research: 1) long term medication works and 2) long term medications interferes with progress. One of these analyses kinds of lands in the middle, and the other is 100% supportive of medication.
We’ll discuss possible reasons why both valid analyses come to such different conclusions, and what this means for us.
This analysis follows studies which look to understand the risks of maintenance (Long-Term usage) compared to risks of discontinuing medication AFTER remission in first episode psychosis. Seven studies were included.
Now, they looked for specific things, particularly comparing hospital relapse rates and hospital admission rates of those First Episode Psychosis individuals who maintained antipsychotic medication to those who were discontinuing their medication. For the studies which used an intermittent treatment approach, the participants medication was discontinued by 50% every two weeks. For those exhibiting prodromal symptoms, medication was reintroduced. In the crisis-based approached, medication was only reintroduced upon a full-blown episode.
Ultimately, higher relapse rates and hospitalization rates were seen in those discontinuing medication.
Two of the studies provided information on psychosocial outcomes like employment status or quality of life measurement.
I encourage you to read the analysis for yourself. I found it shocking that things like an individual’s place in society, their level of function in their community, their sense of purpose, the amount of support available, was not included. Yes, medication discontinuation seems to increase the likelyhood of relapse according to this analysis, but what could be the reason for this? Only medication? Or what about lack of support? What about the fact that tapering off medication with 50% of the dosage broken down every two weeks is indeed quite fast? Perhaps the speed effected the results of that one study.
Another rather glaring fact which makes me worry for the integrity of the analysis is the possible bias of the authors. One of them recieved support from Janssen-Cilag (think Haldol) and Otsuka Pharmaceuticals (think Abilify). This author also was an investigator on trials funded by AstraZeneca (think Seroquel) and Janssesn-Cilag. He holds a Pfitzer (think Prozac) Neurosciences Research grant.
Another author received sponsorship from Otsuka to attend a conference, and has shares in GlaxoSmithKline (think Paxil) and AstraZeneca. The last author attended meetings supported by Sunovion Pharmaceuticals (think Lunesta).
The only inherent problem with this is conflict of interest. There are times many researchers have been caught falsifying data or misreporting data with the agreement that they would get paid extra by the pharmaceutical companies funding their research. This is also common in the world of regular medical science and was particularly a catalyst for the Opiate Epidemic. Think Purdue Pharma.
This is the largest issue medical science faces today.
This overview looks at possible prevention of psychosis, which is curious in itself. You can read in the paper all the different steps and stages they present which could, with further study, advance the way psychosis is treated and/or identified in an individual. They acknowledge that despite all the preventative strategies currently in place, often people will fall back into old symptoms following their first episode.
They updated a 3-trial meta-analysis to 12 trials and found that relapse rates while undergoing preventative care strategies were, on average, lower than relapse rates of those undergoing standard treatment. However, they found that there was no substantial meta-analysis support that showed integrative preventative strategies significantly improved anyone’s potential rate of relapse in comparison to a standard level of care.
They also found that the hypothesis that each new psychotic episode “damages” the brain or is “neurotoxic” to the brain and therefore “progresses the disease” has no significant empirical evidence to support it. This hypothesis is known as the “neurotoxic hypothesis of psychosis” and I’ve heard people cite it quite often.
The overview goes on to discuss future studies and cannot conclude that any one way is the correct way. They advise against using certain medical strategies that observe and study physical illness to observe, study, and treat mental health conditions; the brain varies more so than the body in more ways than one, and to assume that both can be treated equally is pretty far fetched.
There is a lot of theory in this overview and I’m not sure how much of it could be put into practice. They discuss some ways in the article, if you’re interested, including areas of support. Accordingly, their authors were not previously supported by any pharmaceutical companies.
And so where does this leave us? We have empirical evidence that medication can halt a crisis, but it is unclear, according to the second study, if we’re simply prolonging the inevitable or helping cease the progression of something. In the case of prolonging the inevitable, it would seem more humane to let people ride through the torture and support them in other ways. In the case of ceasing the progression of something–well, it seems like we’d have more reliable and verifiable data if that were the reality.
I stopped medication because I don’t like uncertainty. And the truth of medication is uncertain. I stopped medication because I don’t like being lied to. And much of medication research and marketing is based in lies, even small ones.
This may not be the path for you. What makes your medication important to you? What makes it torturous for you? Do the risks outweigh the benefits? Would you like to discontinue them some day?
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