Abilify- Stanford Clinic Patients

Navid

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Hi All:

Lately have ready numerous posts on Facebook (Stanford/ME group) about the use of Abilify. Apparently the clinic is prescribing very low dose of Abilify as part of their treatment protocol. Does anyone have any experience using this drug. If so can you discuss the results you had using the drug. Did it help you. Did it alleviate any symptoms. Did it have any negative side effects. Any insight/info appreciated.

Thanks.
 

perrier

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Hi All:

Lately have ready numerous posts on Facebook (Stanford/ME group) about the use of Abilify. Apparently the clinic is prescribing very low dose of Abilify as part of their treatment protocol. Does anyone have any experience using this drug. If so can you discuss the results you had using the drug. Did it help you. Did it alleviate any symptoms. Did it have any negative side effects. Any insight/info appreciated.

Thanks.
This is an antipsychotic used for schizophrenia and bi-polar.
 

Navid

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This is an antipsychotic used for schizophrenia and bi-polar.
Hi Perrier: Yes I know this is the on label use of the drug in normal prescribed quantities but Stanford is using it in micro dosages to deal with brain inflammation.....is what I read on their Facebook page. Some patients are saying it is helping them. I just wonder if any are severe patients. Thanks for your input.
 

xrayspex

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Hi Perrier: Yes I know this is the on label use of the drug in normal prescribed quantities but Stanford is using it in micro dosages to deal with brain inflammation.....is what I read on their Facebook page. Some patients are saying it is helping them. I just wonder if any are severe patients. Thanks for your input.
I can believe it--when that was first being used more widely I was curious about it as it sounded like something I pictured could be helpful in microdose. I can only take microdoses of things when I do...
I know a friend of mine with similar health problems as ME found small dose of risperidol helpful, it is technically an anti-psychotic but it is used off label a lot like for AD/HD sometimes etc
 

perrier

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Hi Perrier: Yes I know this is the on label use of the drug in normal prescribed quantities but Stanford is using it in micro dosages to deal with brain inflammation.....is what I read on their Facebook page. Some patients are saying it is helping them. I just wonder if any are severe patients. Thanks for your input.
Hello Navid: I don't know much about various pharmaceuticals in existence, however, if the idea is to lower brain inflammation, am I to assume now that there is not medication out there designed just for this problem--brain inflammation
 

Navid

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Hello Navid: I don't know much about various pharmaceuticals in existence, however, if the idea is to lower brain inflammation, am I to assume now that there is not medication out there designed just for this problem--brain inflammation
Sorry I dont know the answer to that. I just know what I have read on the Facebook group page about Abilify written by Stanford ME Clinic patients.
 
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Here's what I know, not from personal experience: Abilify can cause some interesting and life ruining side-effects, including compulsive gambling, compulsive shopping, compulsive hyper-sexuality, compulsive overeating. Other more usual adverse reactions in adult patients in clinical trials were nausea, vomiting, constipation, headache, dizziness, akathisia, anxiety, insomnia, and restlessness.

It can cause a wide range of more exotic side effects, ranging from Neuroleptic Malignant Syndrome to orthostatic hypotension, tardive dyskinesia, seizures, cognitive and motor impairment, metabolic changes, dysphagia, suicide. I'd assume that would be more likely on higher doses, but who knows.

It clears thru the P450 system, natch, specifically, CYP2D6, and if you're a poor metabolizer, it's easy to be excessively dosed. If you're taking concomitant CYP3A4 inhibitors or CYP2D6 inhibitors or strong CYP3A4 inducers you can also run into problems.

Whether any of this would be a problem on "....a very low dose ...." of Abilify, who knows. And what is a low dose? The lowest tablet dose is 2 mgs. It comes in a liquid as well which probably can be titrated even lower than a pill-cutter could manage.

I would assume that Stanford would run appropriate tests on the patient's P450, and that they wouldn't be spinning the chamber without good base research, but I think you need to find out more specifics and proceed with caution, yes?
 

Hip

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Lately have ready numerous posts on Facebook (Stanford/ME group) about the use of Abilify. Apparently the clinic is prescribing very low dose of Abilify as part of their treatment protocol. Does anyone have any experience using this drug.
Interesting. For years now I've used very low doses of a similar drug called amisulpride, which I found had a number of benefits for ME/CFS and other symptoms. I also tried very low dose Abilify, and found its effects similar to amisulpride (though Abilify I found slightly overstimulating, so switched back to amisulpride).

These two drugs are similar in that they both work on the dopamine autoreceptors rather than the dopamine receptors.

I started a thread about very low dose amisulpride here.
 

Navid

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Whether any of this would be a problem on "....a very low dose ...." of Abilify, who knows. And what is a low dose? The lowest tablet dose is 2 mgs. It comes in a liquid as well which probably can be titrated even lower than a pill-cutter could manage.

1 mg according to patients on Stanford M/E Clinic Facebook page. Read this FB page if you want to see what the patients there are talking about.

I posted here to see if any patients here had experience from their medical professionals.
 
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I posted here to see if any patients here had experience from their medical professionals.
I responded because they tried to put my mother on it as she was fighting colon cancer that had metasticized to her liver which drs had failed to diagnose until it had metasticized, and I had to learn everything I could about it to prevent that. Sadly , they went behind my back when I was at a dr's apptment, and the results were stellarly bad.

So while I don't have first hand experience, I do have some knowledge and input I thought might be helpful to you. If I spoke out of turn, I apologize.
 

Hip

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I did not know that antipsychotics have anti-cancer effects.


It should be mentioned though that when you use very low dose Abilify or amisulpride, this dose level actually works in an opposite way to when you take these antipsychotic drugs at their normal doses. So at very low doses, these are not really to be considered as antipsychotic drugs. They can be considered as a different drug when used in very low doses.

Antipsychotics generally antagonize dopamine D2 receptors, so an antipsychotic drug like amisulpride, when taken in its normal dose range to treat psychosis (which is up to 1200 mg daily), acts as a D2 antagonist.

But when taken in a very low dose regimen (which starts at 12.5 mg daily), amisulpride effectively acts like a D2 agonist.
 
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used_to_race

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It should be mentioned though that when you use very low dose Abilify (or amisulpride), this dose level actually works in an opposite way to when you take these antipsychotic drugs at their normal doses. So at very low doses, these are not really to be considered as antipsychotic drugs. They can be considered as a different drug when used in very low doses.
Do you have a citation for this? I am very skeptical of this claim, and to those in the bleachers, I would be extremely wary of taking any kind of neuroleptic medication at any dosage, especially for a long time. Antipsychotic drugs aren't even effective in the long-term in schizophrenia (see the book Anatomy of an Epidemic by Robert Whitaker), and they cause permanent brain damage such as tardive diskinesia and tardive dementia. If you don't have severe psychiatric illness, I don't see a reason to go anywhere near these medications.
 

ebethc

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do ketogenic diets lower brain inflammation?

I know a keto diet is supposed to lower inflammation generally, but I haven't read about brain inflammation... also, a lot of the keto diet info that I'm coming across is by breathless cross-fitters, and not real data.
 

Hip

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Do you have a citation for this? I am very skeptical of this claim
This unusual dose-dependent reversal from agonism to antagonism relates to amisulpride's activation of the presynaptic autoreceptors:

I found this paper:
At low doses, it enhances dopaminergic neurotransmission by preferentially blocking presynaptic dopamine D2/D3 autoreceptors. At higher doses, amisupride antagonises postsynaptic dopamine D2 and D3 receptors, preferentially in the limbic system rather than the striatum, thereby reducing dopaminergic transmission.
You might also like to read the article Amisulpride, the Wonder Drug from France! which I posted in the very low dose amisulpride thread. That also talks about the different effects of the very low-dose, low-dose and normal-dose regimens.


I believe that this also applies to Abilify (but I am not entirely sure now, as I cannot seem to find a paper that indicates the reversal of effects at different dose levels).

This paper says:
Aripiprazole’s polypharmacology—characterized by its unique agonist activity at dopamine D2, D3 and serotonin 5-HT1A receptors as well as antagonist activity at serotonin 5-HT2A receptors


There are indeed significant risks involved in normal-dose antipsychotics, such as the developments of extrapyramidal symptoms. And even for low-dose amisulpride, which you might expect would be largely exempt from these risks, there was one case report of a patient given low-dose amisulpride (100 mg daily) for depression developing extrapyramidal symptoms.

However, I am taking not the low-dose regimen, but the very low-dose regimen (I take just 12.5 mg of amisulpride daily).



Note that antipsychotics are not the only class of drugs acting on the brain that have significant and permanent side effects. Lots of antidepressants, but especially SSRIs, are known to cause permanent sexual and emotional dysfunction, that remains even after stopping the drugs. See post-SSRI sexual dysfunction, which one study found occurred in 70% of patients taking SSRIs or SNRIs.

I feel safer taking very low-dose amisulpride than I would taking an SSRI.
 
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used_to_race

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I would still caution against the use of this kind of medication in any condition and at any dosage, given that its effects have not been studied long-term at this dosage and it has been shown to have irreversible effects at higher dosages. The 12-week study you cite in your linked thread is not long enough to assess long-term risk or efficacy.

And while I'm genuinely glad, @Hip, that you have found some success with this treatment protocol, and I value your input and the mindset of sharing your findings with the community, I think we can agree that it's impossible to say whether you, I, OP, or anyone else on this forum has the same thing going on with us at a molecular level. Very low-dose amisulpride or Abilify is probably pretty safe, but I feel the need to caution against taking shots in the dark like this. And just because the Stanford clinic is using something doesn't mean it's safe or effective. I don't think there are too many patients who have gotten good results with Stanford and I've heard some pretty abysmal accounts of their care.
 

Hip

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I would still caution against the use of this kind of medication in any condition and at any dosage
Yes agreed, people should understand that there are risks.

There was actually a recent thread in which @Stretched developed a hand tremor after 18 months of very low-dose amisulpride at doses up to 25 mg daily, along with other drugs (Ambien and Xanax). It's not clear whether this was caused by amisulpride (hand tremor is also a side effect of Xanax withdrawal), but it's certainly possible.
 
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raghav

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I take ziprasidone 40 mg at night. It helps me sleep well. It also gives some day time energy, which could be due to the improved sleep or could be due to dopamine levels increasing or both. I was on 20 mg for quite sometime. It was sufficient. But then 20mg was removed from supply in the market. So taking 40 mg.