Aripiprazole - Abilify

J

Jim001

Established Member (Voting Rights)
This thread brings together posts from three previous threads on the topic of Aripirazole

I heard a while back that Stanford is using a low dose of the anti-psychotic Abilify as a neuro antiinflammatory and finding some success. Are any of you here using Abilify, in either low dose or standard dose? How do you find it affects your ME, if at all? I'm thinking about asking my doctor about it when i'm in next.

For those of you who are curious, i'm told Dr Bonilla prescribes a 2mg pill and suggests starting with 1/4 of it before bed, and experimenting over time within a dosage range of .5mg - 2mg per day. Everyone's sweet spot is different.
 
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adambeyoncelowe said:
I'm not sure this is the best place for discussing experimental meds. In general, none of us can give medical advice anyway.

Wikipedia lists the following side-effects:

That's quite a list.
Click to expand...

I was prescribed Risperdal, an anti-psychotic, for a sub-mania condition which was due to, a shrink told me, probably a reaction to tapering too fast off an SRI anti-depressant.

Anyway, I took Risperdal for two to three nights and noticed already the insatiable appetite problem but also, a certain relief of fibro pain.

Longterm though, not a great drug option and certainly not at full dose, in my humble former RN and patient opinion.
 
Some posts discussing forum culture have been moved or copied to the Rule 5 discussion thread. If you want to post about forum culture with respect to discussion of experimental drugs, please do so there.

@Alvin

I agree. I tried to make the point a week or so ago here https://www.s4me.info/threads/how-d...icine-on-s4me-forums.9750/page-10#post-174669 that I picked up a feeling that folks on this forum tended to look down on those who tried meds that were not FDA approved (which is nothing) to treat ME/CFS, and that being against experimenting may not be the most prudent strategy, especially for those people whose disease is progressing.

@Jim001 I imagine that physicians might be prescribing it in an effort to increase energy. See reviews here https://www.drugs.com/comments/aripiprazole/abilify-for-depression.html

@adambeyoncelowe In my opinion, godchengis was not asking for explicit medical advice, he was merely asking for other's experiences with Abilify. I agree that Abilify has significant side effects, even potentially at the low doses recommended by Stanford--see here again https://www.drugs.com/comments/aripiprazole/abilify-for-depression.html and search for low ratings. But again, you are assuming (I think) that there will be a miracle cure for ME/CFS and it will be side-effect free. Almost all of the meds for the other horrible chronic diseases like MS and RA have bad side effects. I think that people should be made aware of the potential side effects of various treatments and then be allowed to make a decision on whether to take the treatment. If experimenting is not for you, OK by me, but please try not to judge others who don't wish to wait 20-30 years until an FDA (or EU equivalent) drug is approved for ME/CFS.

In my opinion, people who do experiment with "reasonable treatments"* should be encouraged to report here on whether their particular trial was effective, useless or harmful. This would be helpful to other PWME.

I think that some of this boils down to what is construed as a reasonable treatment. For some on this forum it will only be meds that have passed through phase 3 RCT studies. For people on PR, it is natural CCI treatment from holistic chiropractors (yes, really). So there could be some gray area, but for me at least, it is fairly easy to tease out the obviously bogus stuff.
 
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Well, my caree has been on this, I think to augment her existing antidepressants (supposedly prescribed to aid sleep) and to deal with some serious anxiety issues, but not directly for treating ME/CFS. She came off it for a while, got a load of stressful things dumped on her within a short space of time, and the anxiety was back. It may perk you up, I suppose, but possibly more than is desirable for a PwME? I don't know: the jury's still out as far as we are concerned.
 
Jim001 said:
I heard a while back that Stanford is using a low dose of the anti-psychotic Abilify as a neuro antiinflammatory and finding some success. Are any of you here using Abilify, in either low dose or standard dose? How do you find it affects your ME, if at all? I'm thinking about asking my doctor about it when i'm in next.

For those of you who are curious, i'm told Dr Bonilla prescribes a 2mg pill and suggests starting with 1/4 of it before bed, and experimenting over time within a dosage range of .5mg - 2mg per day. Everyone's sweet spot is different.
Click to expand...

This med supports the benefits of my other ME/CFS treatments. I can tell that it works for me b/c I couldn't get out of bed for couple days when my prescription was delayed. It's meant to be low-dose as it has a different mechanism based on what's called a hormetic principle than at a higher dose. I was recommended .25-1.75mg. I was told the effective dose within the range depends on the person and how individuals metabolize the medication. I went down on the dose once I started experiencing mild side effects, while it no longer improved my fatigue.
 
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Ive noticed that two people ive followed for a while (Whitney Dafoe being one of them) has claimed symptom relief from this

Maybe it could be worth doing a trial on?

I dont usually care too much about anecdotes, but I am interested in things that alter brain function, as Im interested in Jonathans signalling theory

All I know about Abilify is that its used for schizophrenia/epilepsy
 
Marky said:
Ive noticed that two people ive followed for a while (Whitney Dafoe being one of them) has claimed symptom relief from this

Maybe it could be worth doing a trial on?

I dont usually care too much about anecdotes, but I am interested in things that alter brain function, as Im interested in Jonathans signalling theory

All I know about Abilify is that its used for schizophrenia/epilepsy
Click to expand...
I understand that Dr Bonilla has been using this med at Stanford with a good number of patients. But I also understand that a good number of folks have not been able to tolerate this. I am interested in what this drug may be doing, however. I'm listening to any explanation. Thank you.
 
Marky said:
Ive noticed that two people ive followed for a while (Whitney Dafoe being one of them) has claimed symptom relief from this

Maybe it could be worth doing a trial on?

I dont usually care too much about anecdotes, but I am interested in things that alter brain function, as Im interested in Jonathans signalling theory

All I know about Abilify is that its used for schizophrenia/epilepsy
Click to expand...

It may be that in Whitney, the Abilify is reducing his severe gastroparesis and I can only imagine the effects that has on the body as whole, including brain fog and fatigue. I don't know about your other reference's response.

Wikipedia has a good review of it's actions in the brain, it is a well-studied drug and appears to act on D2 receptors where it's cumulative action is increasing dopamine activity ( I think - it gets a little complicated with all the pre-synaptic stuff and types of receptor binding). But it's largely on D2 receptors.

This isn't to say it doesn't have other effects on other receptors, but it's effect there is not strong afaik. It may have effects on cells/receptors/systems outside the brain as well, perhaps on d2 receptors in other parts of the body, although I'm not sure how likely this is.

I read a story of this drug improved a patient with me/cfs over the course of maybe, 9 months, over 3-4 years ago. But that patient was fairly recently ill, a year or 2, and recovered while pacing. That was my memory at least. I couldn't find the post now if I wanted too unfortunately.
 
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My uneducated hunch is that it could be more useful to do a trial on something like this than meds like mestinon, which never reach the CNS. It's worth noting that the anecdotal reports of improvements in ME/CFS using Abilify are from a low or very low-dose regimen, which is far lower than dosages used in e.g. bipolar disorder or schizophrenia. Quetiapine for example is sometimes used as a sleep aid at low dosages, where it doesn't act as an antipsychotic in the sense that it provides little to no dopamine antagonism.
 
Hello,

I'm on approximately day 45 of a trial of aripiprazole (Abilify). I wanted to do a post around day 50 or so, but I am feeling the pressure to post based on the recent Abilify thread. I decided to try Abilify after hearing that Whitney was improving on it.

I have progressive non-HLA-C*07:04, non-HLA-DQB1*03:03 ME/CFS. My main symptoms are fatigue and cognitive and sleep disturbances--PEM is a minor component for me.

Before the trial I would categorize myself as moderate.

Received a prescription for 2mg tablets.

Trial

Day 1-4 took .25 of a tablet or 0.5 mg/day in the morning
Day 5-6 took 0.5 of a tablet of 1 mg/day
Thereafter taking 1 whole 2 mg tablet--still taking it currently

Things started to get better after about a week or so. The main improvement is mornings!
Whereas before I might not get out of bed until 11 AM or so, I now get up and out of bed about 7/8 AM and start doing stuff. It's a pretty dramatic change. More energy overall. So far no poop out or tachyphylaxis (this did occur on valtrex for me). Sleeps seems a bit better.

I think waking up early thing might have to do with findings of this study (sleep offset means waking up).

Low dose of aripiprazole advanced sleep rhythm and reduced nocturnal sleep time in the patients with delayed sleep phase syndrome: an open-labeled clinical observation

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5965391/

Results
Sleep onset, midpoint of sleep, and sleep offset were significantly advanced by 1.1, 1.8, and 2.5 hours, respectively. Unexpectedly, sleep duration became significantly shorter by 1.3 hours after treatment. Their depressive moods showed an unremarkable change.

Conclusion
Low dose of APZ advanced the sleep rhythm and reduced nocturnal sleep time in the subjects with DSPS. Since it is not easy for physicians to treat prolonged sleep duration often associated with DSPS, this medication would become a new therapeutic option for these patients.
Click to expand...


Overall I'd say I've gone from moderate to mild. I still am not a bundle of energy and still need naps, and still have brain fog, but everything seems to be a lot better. No major side effect either.

If others do trials it probably make sense to collect data and try to publish this (unblinded). Because Abilify is off-patent there will be little incentive do any formal trials. To do a study, will need to find a good questionnaire, e.g. SF-36 physical is not good, Chalder fatigue is not great. Questions like what time do you wake up and what time do you get out of bed would be very useful.

Also, I reached out to Naviaux to ask about mito toxicity from Abilify and here is what he said:

"Yes. This is a well known issue in the mitochondrial medicine community. Atypical antipsychotics have some antimitochondrial effects. .....I am glad that some people with ME/CFS are exepriencing relief with low-dose Abilify. However, I see this as a temporary bandaid that while helping to relieve some symptoms, will not lead to any cures because it is symptomatic treatment and is not directed at the root problem of ME/CFS. Experience teaches us that if any symptomatic treatment is used chronically, a fraction of patients will experience side effects and this fraction will grow in proportion to the duration of treatment."

That's his opinion.
 
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Thank you for posting your experience. I'm glad you are feeling an improvement and I hope it will persist.

Although I must say you were getting up at a fairly civil hour beforehand and have reverted to some sort of barbaric wake time in the middle of the night! ;)

"Yes. This is a well known issue in the mitochondrial medicine community. Atypical antipsychotics have some antimitochondrial effects. .....I am glad that some people with ME/CFS are exepriencing relief with low-dose Abilify. However, I see this as a temporary bandaid that while helping to relieve some symptoms, will not lead to any cures because it is symptomatic treatment and is not directed at the root problem of ME/CFS. Experience teaches us that if any symptomatic treatment is used chronically, a fraction of patients will experience side effects and this fraction will grow in proportion to the duration of treatment."
Click to expand...

Now if it's not troubling him too much would Mr Naviaux kindly oblige to enlighten us on what is the root cause of ME/CFS? We are surely agog to learn. No shit drugs can have side effects. And what is this 'mitochondrial medicine community'?
 
James Morris-Lent said:
Thank you for posting your experience. I'm glad you are feeling an improvement and I hope it will persist.

Although I must say you were getting up at a fairly civil hour beforehand and have reverted to some sort of barbaric wake time in the middle of the night! ;)



Now if it's not troubling him too much would Mr Naviaux kindly oblige to enlighten us on what is the root cause of ME/CFS? We are surely agog to learn. No shit drugs can have side effects. And what is this 'mitochondrial medicine community'?
Click to expand...
I think there's a thread on his latest theory (a new version of the cell danger response where the problem is too much energy going to the wrong places rather than too little energy).
 
Thanks for the update, fingers crossed improvements will be maintained.

Naviaux is researching mitochondria and if I understood his position correctly, he thinks most diseases including ME/CFS have their root cause in mitochondrial malfunction, which is nothing much more than a hypothesis at this stage I reckon. Looking at some articles it does seem well established that antipsychotics have an effect on mitochondria, however, I wonder if this wouldn't also be dose-dependent like for example the metabolic effects like weight gain, which certainly are. If that's the case, then a low-dose regimen seems safer relatively speaking.

I think the more likely issue would be that the effects starts waning over time, which is a well-known issue with antidepressants for example. Is this also the case with antipsychotics in general? No idea, but from my experience drugs and supplements do tend to stop working, which is another big frustration with this disease.
 
dreampop said:
Wikipedia has a good review of it's actions in the brain, it is a well-studied drug and appears to act on D2 receptors where it's cumulative action is increasing dopamine activity ( I think - it gets a little complicated with all the pre-synaptic stuff and types of receptor binding). But it's largely on D2 receptors.
Click to expand...

Thanks for your insight. So, like a parkinsons-drug in that regard?
 
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