Aripiprazole - Abilify

Thanks for the information. I took it for 7 months, but unfortunately, the effect wore off after I took too much... I stopped at 0.60 mg. I'm taking a 3-month break and I'm going to try again without increasing my activity level for 2 months. It's the only medication that has worked effectively for me. I went from 600 steps to 2000 steps per day and I can tolerate 2 hours of screen time per day, and most importantly, I was able to work 1.5 hours per day. I have between severe and very severe symptoms.
 
I have prescribed Aripiprazole (Abilify) as an atypical antipsychotic in psychiatric practice (not for ME/CFS). This being In Aotearoa/NZ, a decade ago, prior to medically retiring. It could only be prescribed by a psychiatrist (and then by their GP on discharge from the public mental health service).

But in 2018, GP's were allowed to prescribe it for very specific indications - that being the treatment of Schizophrenia and Bipolar Affective Disorder (usually after discussing the case with a psychiatrist) and if the patient had unacceptable weight gain, intolerable side effects or suboptimal response to another atypical antipsychotic. One reason for the change was the difficulty accessing the mental health service due to high demand, but also once an atypical had been used for about a decade here, they were considered "safe enough" to be prescribed by a GP within the parameters given.

Psychiatrists also use it off label, on occasion, for some other mental health disorders after standard treatments have not been effective. This is via expert consensus within our Australasian College of Psychiatry. If an Australian psychiatrist is prescribing it, that is concerning as there are no guidelines for the use of this medication for the treatment of ME/CFS because there is no good evidence base for it. They could, of course, prescribe it for mental health conditions arising from having ME within those parameters given.

Abilify like all atypical and typical antipsychotics have serious and severe long term side effects. They are numerous, so I won't describe them all - but especially Tardive Dyskinesia (a disabling and distressing permanent movement disorder), weight gain, increased cholesterol and blood glucose and subsequent metabolic syndrome that increases the risk of cardiovascular disease - causing people who take atypical antipsychotics to have reduced life expectancy (about 15-20 years). There is also the rare cases of the life threatening Neuroleptic Malignant Syndrome. Some of these risks are likely to be dose (and disorder) dependent but there have been reports of cases with lower doses.

My point being there is no data for the use of aripiprazole outside of the treatment of mental health disorders. So no data for the use of low dose aripiprazole on a healthy population, let alone on ME/CFS.

I don't know any person in Aotearoa/NZ on LDA but I guess someone may have convinced their GP with the Stanford study and they have chosen to prescribe it off label but the GP would have to get written informed consent to use it off label for ME/CFS. The prescriber would be putting themselves into medicolegal jeopardy if the person developed side effects they were not informed about that were serious, disabling or life threatening. People tend to minimise serious side effects like TD but I have diagnosed it with people who have taken very low doses of typical antipsychotics used for medical (non-psychiatric) purposes.

24% of the survey had harm (details not disclosed) or stopped LDA. That is a significant amount.

Considering all the biases described by others - that is likely to make this Harm/Discontinued group larger.

As a pwME just another reason (outside of the lack of a properly performed RCT) to have major alarm bells ringing!

Atypical antipsychotics (although they are more popular and effective than the older antipsychotics) are still potent psychiatric medications and come with a lot of side effects likely to impact people with ME/CFS - sedation, worsening of sleep, lowering of blood pressure, anxiety, restlessness, agitation and GI symptoms.

edited to add some further medicolegal stuff
 
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Do you have some kind of reference article / publication for the reduced life expectancy?
If possible including Abilify
- 15-20 years is a lot. wow
I would also be curious to read more about this. A quick search turned up one review that found Schizophrenia resulted in a 15-20 year decrease in lifespan, while antipsychotic usage, despite serious side effects, resulted in increased life expectancy. Regarding (full dose) aripiprazole specifically, they state:

In our study, patients on aripiprazole had the lowest mortality rate, which was consistent with previous conclusions,30,38 regardless of whether administration was oral or long-acting injection. Previous studies have suggested that aripiprazole was more beneficial than other antipsychotics regarding metabolic parameters,39,40 although whether this might be related to lower mortality still requires in-depth investigation.
[edited to correct an early statement that the 15-20 year reduction in life span was only for untreated schizophrenia; the estimate actually appears to include both treated and untreated patients]
 
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Do you have some kind of reference article / publication for the reduced life expectancy?
If possible including Abilify
- 15-20 years is a lot. wow
https://onlinelibrary.wiley.com/doi/10.1002/wps.20699

This is specific for the mental health disorder of schizophrenia, who as a group, are prescribed higher doses of antipsychotics compared to psychiatric patients without schizophrenia and these people require lifelong treatment which may not be the case for people without schizophrenia.

When the atypical antipsychotics came out in the 1990's, they definitely were more effective than most typical antipsychotics for the treatment of schizophrenia and other psychotic disorders. They later proved to also be an effective mood stabiliser in the 2005's. But they came with a price - significant weight gain and a change to blood lipids and glucose. Known as Metabolic Syndrome within psychiatry - it increases the risk of CV disease and Type 2 Diabetes which accounts for most of the deaths in schizophrenia outside suicide and sudden death due to cardiac arrhythmia.

All clients, put on even low doses of atypicals, including aripiprazole, are monitored for Metabolic Syndrome. I have seen these effects many times when I prescribed atypicals for patients without schizoprenia. Weight gain is a frequent reason client's stopped atypicals. There has been a rising use of atypical antipsychotics for their sedative and anxiolytic properties in other psychiatric disorders including severe behavioural disturbance, since the long term use of benzodiazepines in these other disorders have not been shown to be as effective as other treatments (eg psychotherapy) and their high risk of abuse and dependency potential.

Although Aripiprazole has a lesser side effect profile than some of the previous ones in it's class, eg less metabolic and cardiovascular side effects including cardiac rhythm disturbances (that can be fatal) and some psychiatrists would consider the life expectancy to be improved compared to other atypical and typical antipsychotics (as per this paper) https://pmc.ncbi.nlm.nih.gov/articles/PMC10758338/, they do clearly state the caveat that this is an observational study only with quite a lot of unknown confounders and requires more studies.

edit I have not referenced the Korean paper as someone else has just posted it!
 
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So, would the following be accurate?

Although the side effects of aripiprazole are frequently significant and occasionally very serious indeed, the 15 to 20 year reduction in life expectancy for people with schizophrenia using antipsychotics will be the result of a number of factors. Those might include use of antipsychotics with worse side effects than aripiprazole, as well as the many consequences of having a very serious psychiatric disease.

I don't want to promote the use of a drug with only anecdotal (and therefore questionable) evidence of efficacy for ME/CFS and the chance of serious side effects, but I guess if someone is taking a low dose of aripiprazole and they and their medical team are carefully monitoring for problems and they are otherwise living a healthy stable life, the likely reduction in life expectancy for them will be very much reduced compared to the reduction in life expectancy that schizophrenia (and its treatments) causes.

The only complication might be that with the inability to be normally active that is part of ME/CFS, the metabolic and cardiovascular side effects could be exaggerated in ME/CFS.
 
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Although the side effects of aripiprazole are frequently significant and occasionally very serious indeed, the 15 to 20 year reduction in life expectancy for people with schizophrenia using antipsychotics will be the result of a number of factors.
Reading through the studies linked, I am not seeing the 15-20 year reduction associated with antipsychotics at all. A shortened life expectancy for people suffering from schizophrenia is noted (a reduction stated as being 14.8 years in one, 15-20 in another), but both of these papers indicate that, even with the many serious side-effects, all of the treatments examined seem to result in an increased life expectancy for people with schizophrenia, and that aripiprazole seems to be associated with the best outcomes with regard to mortality. Unless I missed something (and if I did, @hibiscuswahine, please tell me!), I do not think we can conclude much beyond that fact that it appears people with schizophrenia who take aripiprazole tend to live longer than those who do not.

With regard to pwME who take LDA, I think we can still say frustratingly little - we know that at standard doses, aripiprazole carries the risk of serious side-effects - some of which, as you note, @Hutan, could well be particularly problematic for pwME - but we have no idea how common they are, whether the positive effects of LDA (if any) might mitigate some of these and to what extent they might be dose dependent. If, as some would have it, the reduced dosage actually does have a different effect (eg wrt dopamine), it could even be that there are additional side effects at low dosages that do not occur at the levels given to schizophrenia patients!

All of which just highlights once again the fact that a proper RCT really is needed even, or perhaps especially, if a negative result is expected. In the meantime, this continues to be prescribed to thousands of people.
 
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So, would the following be accurate?

Although the side effects of aripiprazole are frequently significant and occasionally very serious indeed, the 15 to 20 year reduction in life expectancy for people with schizophrenia using antipsychotics will be the result of a number of factors. Those might include use of antipsychotics with worse side effects than aripiprazole, as well as the many consequences of having a very serious psychiatric disease.

I don't want to promote the use of a drug with only anecdotal (and therefore questionable) evidence of efficacy for ME/CFS and the chance of serious side effects, but I guess if someone is taking a low dose of aripiprazole and they and their medical team are carefully monitoring for problems and they are otherwise living a healthy stable life, the likely reduction in life expectancy for them will be very much reduced compared to people with schizophrenia.

The only complication might be that with the inability to be normally active that is part of ME/CFS, the metabolic and cardiovascular side effects could be exaggerated in ME/CFS.
I think guessing is the problem, which defeats the purpose of the forum in my mind (after being told off numerous times for doing this by many members;) ) We don't want physicians (or psychiatrists) prescribing antipsychotics or any psychiatric medication without 1) clear evidence it will be clinically effective in a large proportion of pwME over a reasonable period of time and this data, including the short term risks and long term harms so they can be carefully considered before consent is given. Ideally, I also think we need to have a reasonable understanding how low dose Abilify works based on further research into ME brain function.

Psychiatrists are looking at neurotransmitter receptors and pathways that are reasonably known in Schizophrenia and BPAD. At least we can see dose dependency and clear clinical outcomes and this has been replicated for many years worldwide so much so that these medications are are funded by countries like NZ and the UK in the public health system because of the very solid evidence base.

Science of course is evolving. We didn't know about the life expectancy problem due to the antipsychotics until 20 years ago with this paper and then all the debate about it, we put it the reduced life expectancy done to smoking, poverty, poor diet, low motivation causing inactivity, lack of social support due to the inherent nature of the disorder etc

We have no long-term data of what an atypical antipsychotic will have on the "healthy population" let alone the ME/CFS population. There is a possibility that the ME/CFS brain may differ from a "healthy" brain, some evidence points to that but we are a long way off knowing comparing it to major mental health disorders.

I think the problem is people think low dose of an antipsychotic (or low dose naltrexone since we are discussing psychiatric medication) should be fine on healthy people, it is only a small dose not like the high doses of major psychiatric disorders but it is not without risks and harms.

I know a few psychiatrists in NZ and Australia who think they can improve ME/CFS by playing around with different psych meds but I have huge doubts about this and have yet to see it, they were likely treating the underlying psychiatric condition premorbid to the ME/CFS. Where are the Case Series (first level of clinical study evidence) printed in our College Journal? (which is the first way to show your peers that this might be a useful treatment and requires further study - none) They are prescribing off label. We do not know what LDA is doing, it might just be giving them a calming state of mind that improves their cognition (for example). They can talk about dopamine, glutamate and a myriad of neurotransmitters and "neuroinflammation" that it may be working on but they don't know. They are just trialling stuff because it might work based on some of the current knowledge which is pretty tenuous at times. Basically they are cowboys (and girls) throwing everything but the kitchen sink at pwME hoping something might work and saying something scientific about receptors and hoping for the best. I doubt it is properly informed consent either.

People with ME are not "healthy" they have a long term chronic illness which has health effects due to our inability to tolerate exercise and the subsequent likely long term effects on our heart, brain and bones, conditions that are often not talked about as there is a lack of epidemiological data. (eg. osteopenia) But if we compare ourselves to healthy people and say then these psychiatric medications should be ok, I think that is problem.

There, of course, is always a risk/benefit ratio that will always be used in this argument because of how severe ME can get and in reality pwME consider and use un-evidenced treatments for ME/CFS everyday, including myself. If people want to take LDA and are well informed and under close medical care, that is their choice and the GP's/Physician's/Psychiatrist's choice.

This is what Google AI says on the topic to just remind people about LDA and the Stanford LDA paper and want confirmation of what I have said. I have bolded the side effects.

"There is no randomized controlled trial (RCT) for the use of aripiprazole in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Evidence is limited to a 2021 retrospective chart review of 101 patients.

The review suggested that low-dose aripiprazole might help reduce symptoms like brain fog and fatigue, but it was not a controlled trial.

Key details about Aripiprazole and ME/CFS:
  • A 2021 study by Stanford Medicine indicated that some patients saw improvements in energy and cognitive function at low doses (mean dose 1 mg) in a cohort of 101 patients.
  • The study's authors and health organizations like the ME Association emphasize that randomized, double-blind, placebo-controlled trials are needed to confirm efficacy and safety.
  • Reported side effects in the retrospective study included fatigue. Other reported risks include weight gain and movement disorders.
  • It is hypothesized that low-dose aripiprazole may modulate neuroinflammation and microglial activation in ME/CFS, but this is not scientifically proven.
As of early 2026, aripiprazole remains an "off-label" option with limited evidence and is not currently recommended as a standard treatment for ME/CFS."
 
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Reading through the studies linked, I am not seeing the 15-20 year reduction associated with antipsychotics at all. A shortened life expectancy for people suffering from schizophrenia is noted (a reduction stated as being 14.8 years in one, 15-20 in another), but both of these papers indicate that, even with the many serious side-effects, all of the treatments examined seem to result in an increased life expectancy for people with schizophrenia, and that aripiprazole seems to be associated with the best outcomes with regard to mortality. Unless I missed something (and if I did, @hibiscuswahine, please tell me!), I do not think we can conclude much beyond that fact that it appears people with schizophrenia who take aripiprazole tend to live longer than those who do not.

With regard to pwME who take LDA, I think we can still say frustratingly little - we know that at standard doses, aripiprazole carries the risk of serious side-effects - some of which, as you note, @Hutan, could well be particularly problematic for pwME - but we have no idea how common they are, whether the positive effects of LDA (if any) might mitigate some of these and to what extent they might be dose dependent. If, as some would have it, the reduced dosage actually does have a different effect (eg wrt dopamine), it could even be that there are additional side effects at low dosages that do not occur at the levels given to schizophrenia patients!

All of which just highlights once again the fact that a proper RCT really is needed even, or perhaps especially, if a negative result is expected. In the meantime, this continues to be prescribed to thousands of people.
The increased life expectancy part of the equation is because if you treat Schizophrenia with an atypical antipsychotic, the patient can have a much more normal and healthy life. It treats both the positive and negative symptoms of schizophrenia i.e not just the delusions and hallucinations but also the specific cognitive problems of schizophrenia, social withdrawal and reduced social drive. So really this life saving advantage of aripiprazole is not applicable to ME/CFS where this is not a problem.
 
The increased life expectancy part of the equation is because if you treat Schizophrenia with an atypical antipsychotic, the patient can have a much more normal and healthy life. It treats both the positive and negative symptoms of schizophrenia i.e not just the delusions and hallucinations but also the specific cognitive problems of schizophrenia, social withdrawal and reduced social drive. So really this life saving advantage of aripiprazole is not applicable to ME/CFS where this is not a problem.
Understood. I am certainly not taking any of this as evidence that aripiprazole is likely to increase the life expectancy of pwME. The confusion arises from the statement that the cardiovascular side effects are

causing people who take atypical antipsychotics to have reduced life expectancy (about 15-20 years).

Where is this information coming from? None of the studies linked seem to make this claim (again, unless I have missed it).
 
Understood. I am certainly not taking any of this as evidence that aripiprazole is likely to increase the life expectancy of pwME. The confusion arises from the statement that the cardiovascular side effects are



Where is this information coming from? None of the studies linked seem to make this claim (again, unless I have missed it).
The only studies are the one I have listed, I have not made any claim, there are no trials on people with ME/CFS who take atypical antipsychotics as I have stated many times.The only papers are on people with schizophrenia who take atypical antipsychotics.

I am not sure what evidence you want and how this is relevant or perhaps we are discussing different things and at cross purposes.. I mentioned the evidence (15-20 years) in schizophrenia and explained different reasons for this to highlight that metabolic side effects (and movement disorders) of atypical antipsychotics are not benign and should be considered when prescribed off label, especially with people with other medical conditions.

Psychiatry takes active measures to try and reduce the risk of cardiovascular side effects and diabetes type 2 in people prescribed atypical antipsychotics for their mental health disorder by assessing CV risk factors, monitoring weight gain, lipids, ECG, glucose, Hba1c etc offering treatment for obesity, smoking etc.
 
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I have prescribed Aripiprazole (Abilify) as an atypical antipsychotic in psychiatric practice (not for ME/CFS). This being In Aotearoa/NZ, a decade ago, prior to medically retiring. It could only be prescribed by a psychiatrist (and then by their GP on discharge from the public mental health service).

But in 2018, GP's were allowed to prescribe it for very specific indications - that being the treatment of Schizophrenia and Bipolar Affective Disorder (usually after discussing the case with a psychiatrist) and if the patient had unacceptable weight gain, intolerable side effects or suboptimal response to another atypical antipsychotic. One reason for the change was the difficulty accessing the mental health service due to high demand, but also once an atypical had been used for about a decade here, they were considered "safe enough" to be prescribed by a GP within the parameters given.

Psychiatrists also use it off label, on occasion, for some other mental health disorders after standard treatments have not been effective. This is via expert consensus within our Australasian College of Psychiatry. If an Australian psychiatrist is prescribing it, that is concerning as there are no guidelines for the use of this medication for the treatment of ME/CFS because there is no good evidence base for it. They could, of course, prescribe it for mental health conditions arising from having ME within those parameters given.

Abilify like all atypical and typical antipsychotics have serious and severe long term side effects. They are numerous, so I won't describe them all - but especially Tardive Dyskinesia (a disabling and distressing permanent movement disorder), weight gain, increased cholesterol and blood glucose and subsequent metabolic syndrome that increases the risk of cardiovascular disease - causing people who take atypical antipsychotics to have reduced life expectancy (about 15-20 years). There is also the rare cases of the life threatening Neuroleptic Malignant Syndrome. Some of these risks are likely to be dose (and disorder) dependent but there have been reports of cases with lower doses.

My point being there is no data for the use of aripiprazole outside of the treatment of mental health disorders. So no data for the use of low dose aripiprazole on a healthy population, let alone on ME/CFS.

I don't know any person in Aotearoa/NZ on LDA but I guess someone may have convinced their GP with the Stanford study and they have chosen to prescribe it off label but the GP would have to get written informed consent to use it off label for ME/CFS. The prescriber would be putting themselves into medicolegal jeopardy if the person developed side effects they were not informed about that were serious, disabling or life threatening. People tend to minimise serious side effects like TD but I have diagnosed it with people who have taken very low doses of typical antipsychotics used for medical (non-psychiatric) purposes.

24% of the survey had harm (details not disclosed) or stopped LDA. That is a significant amount.

Considering all the biases described by others - that is likely to make this Harm/Discontinued group larger.

As a pwME just another reason (outside of the lack of a properly performed RCT) to have major alarm bells ringing!

Atypical antipsychotics (although they are more popular and effective than the older antipsychotics) are still potent psychiatric medications and come with a lot of side effects likely to impact people with ME/CFS - sedation, worsening of sleep, lowering of blood pressure, anxiety, restlessness, agitation and GI symptoms.

edited to add some further medicolegal stuff

Interesting. I am in Australia and was prescribed aripiprazole for mood instability as a young teenager by a psychiatrist here - no dx of bipolar or schizophrenia. It was the first medication he tried - had never been on other atypical antipsychotics, or actually anything but a low dose SSRI. I had a pretty negative experience with it, though the psych tried to convince me I was on too low a dose (5mg) for any side effects. The tremors I had while on it were extreme, but have lessened 5 or 6 years on from stopping it. I have been seeing LDA be talked about a lot lately in community spaces and feel pretty suspicious of it to be honest. A lot of folks seem to think they cannot get the side effects when on a low dose protocol.
 
The only studies are the one I have listed, I have not made any claim, there are no trials on people with ME/CFS who take atypical antipsychotics as I have stated many times.The only papers are on people with schizophrenia who take atypical antipsychotics.

I am not sure what evidence you want and how this is relevant or perhaps we are discussing different things and at cross purposes.. I mentioned the evidence (15-20 years) in schizophrenia and explained different reasons for this to highlight that metabolic side effects (and movement disorders) of atypical antipsychotics are not benign and should be considered when prescribed off label, especially with people with other medical conditions.

Psychiatry takes active measures to try and reduce the risk of cardiovascular side effects and diabetes type 2 in people prescribed atypical antipsychotics for their mental health disorder by assessing CV risk factors, monitoring weight gain, lipids, ECG, glucose, Hba1c etc offering treatment for obesity, smoking etc.
We do indeed seem to be talking at cross purposes and I sincerely apologize if this is down to my having misunderstood something or to my communicating poorly.

The issue was merely whether that 15-20 year reduction in life span was attributable directly to atypical antipsychotic use. In my reading of the papers referenced, that figure includes both treated and untreated people with schizophrenia, with those being treated by atypical antipsychotics living longer on average than the other groups. I therefore understood that it would not be accurate (with current information) to state that atypical antipsychotics reduce life expectancy by 15-20 years.

I have been looking closely at this specific figure simply because I found it so striking - two decades is a lot of life to lose - and thought it important to establish as accurate an assessment of the potential risks as possible. My apologies for any frustrations caused or any misunderstanding on my part. Thanks for engaging - your discussion of the considerable array of potential complications and seriously life-threatening and/or life-altering side effects of aripiprazole is much appreciated.

Looking at the references from the three papers mentioned above, it seems that a 2015 paper by Henderson et al, Pathophysiological mechanisms of increased cardiometabolic risk in people with schizophrenia and other severe mental illnesses is foundational and speculates that, in addition to known "lifestyle" risks that are more common among people with schizophrenia (smoking, sedentary lifestyle, "stress," etc), atypical antipsychotics might also contribute to the observed reduction in life expectancy within this community. Subsequent studies have found that atypical antipsychotics increase life expectancy for people with schizophrenia (though this may still be considerably lower than for the larger population).
 
Interesting. I am in Australia and was prescribed aripiprazole for mood instability as a young teenager by a psychiatrist here - no dx of bipolar or schizophrenia. It was the first medication he tried - had never been on other atypical antipsychotics, or actually anything but a low dose SSRI. I had a pretty negative experience with it, though the psych tried to convince me I was on too low a dose (5mg) for any side effects. The tremors I had while on it were extreme, but have lessened 5 or 6 years on from stopping it. I have been seeing LDA be talked about a lot lately in community spaces and feel pretty suspicious of it to be honest. A lot of folks seem to think they cannot get the side effects when on a low dose protocol.
So you’re still having side effects six years after stopping. I’m sorry that you’re still experiencing that.
 
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