Abilify- Stanford Clinic Patients
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Hoosierfans
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Have they said anything about it?
Hip
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Possibly you may be right, but I have also seen info which suggests amisulpride is a dopamine system stabilizer.
Firstly, like Abilify, amisulpride is categorized as a third-generation antipsychotic, and from what I understand, third-generation antipsychotics are by definition dopamine system stabilizers:
Amisulpride was the very first third-generation antipsychotic, according to this book (page 25):
However this paper contradicts the book, saying that Abilify was the first 3rd generation antipsychotic:
This paper does make clear that third-generation antipsychotics by definition are dopamine system stabilizers.
Secondly, in terms of the mechanism of dopamine stabilization, this article says dopamine stabilization is achieved via partial agonism of dopamine receptors:
Amisulpride is a blocker of D2, so it does not fit the above definition of a dopamine stabilizer.
However, this paper indicates that there may be other mechanisms of dopamine stabilization which amisulpride fits under:
WantedAlive
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Me too! 'Awakenings' is a terrific movie with splendid acting by Williams and De Niro, and for those who've not seen it, it's a true story of 1920's post viral syndrome labelled 'encephalitis lethargica' and well worth the watch. It's origins are still a mystery, spanish flu or enteroviruses suspected, but it just goes to show history keeps repeating itself with patients being labelled with atypical phsycosomatic conditions and left untreated for decades, until one caring doctor goes searching to discover a common cause - an acute infection.
Dr Sachs (Dr Sayer in the movie) treated these patients with L-DOPA, a dopamine precursor just developed at the time for Parkinson's, which brought them out of their comatose state after 30 years. Now we have the coronavirus pandemic and Dr Nath of the NIH is evidently on the watch for parkinsonian-like symptoms post-covid, which may not show up for 10-15 years.
With the effects of Abilify on ME/CFS patients, you start to wonder about the common pathways here after infectious onset.
For example, there is evidence many virus types appear to exploit the dopamine D2R - phospholipase C pathway to enhance viral entry to CNS, and possibly why dopaminergic brain regions are susceptible. Such viruses include Japanese Encephalitis, HIV, coxsackieviruses, H1N1 Influenza, all activate the PLC pathway suspected through the D2R-PLC pathway as described in this study: frontiersin.org/articles/10.3389/fmicb.2017.00651
As explained in the study, increasing dopamine levels enhanced HIV viral entry into cells, and the study indicated Japanese Encephalitis also induced higher dopamine levels during the early acute stage. Naturally, what might be a concern is if infection still exists in PwME, will stimulating D2R promote viral entry? Or, like the patients in 'Awakenings', the acute infection has altered the mechanisms much like when a voltage surge has passed through a circuit board.
I just started Abilify yesterday (0.25mg), so I'll report on my experience in due course.
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My initial overstimulation has mostly calmed down now, a few days since starting and reducing dose from 0.125mg to 0.05mg. I think I'll go back up to 0.1 now.
Hoosierfans
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Banana, are you using a liquid compounded from a pharmacy or are you making your own liquid? I hope it starts to help you... and you as well @WantedAlive!
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I make my own liquid. Pharmacist said it's ok. The liquid turns an off-white so I think it's dispersed enoughBanana, are you using a liquid compounded from a pharmacy or are you making your own liquid? I hope it starts to help you... and you as well @WantedAlive!
@Martin aka paused||M.E. Martin, How are you?
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He can't reply at the moment, so unfortunately not good.
Hearing this and looking at Martin’s older Instagram posts, it looks like he is way worse than before taking abilify. That bags the question if abilify only masks Cfs with false energy and you overdo without knowing. Or, if I saw it correctly, he even went to work for 1-2 days with abilify already not working anymore. So he overdid heavily in the belief that he still can do more.
Also more interesting to see now how it pans out for leokitten. He seems clearly very strict with Energie Management. And if it still will fade away after 3-4 months.
I looked up the affinity from abilify. Seems like that 6mg abilify Block around 75% of all D2 receptors. At 80% is a high risk for potential long term consequences. But there are a lot of report from lower dose combined with other meds which also created very bad results.
2mg sound safe at this point. But should be the max dose for Cfs. Would be interesting to know why Martin went beyond that. Did it already lose effectiveness or did he hope for more at higher doses. Anyway, seems like the moment he went up, and the steady state set in around 1-2 weeks later, the positive effect was gone. So could also be dose problem.
Also more interesting to see now how it pans out for leokitten. He seems clearly very strict with Energie Management. And if it still will fade away after 3-4 months.
I looked up the affinity from abilify. Seems like that 6mg abilify Block around 75% of all D2 receptors. At 80% is a high risk for potential long term consequences. But there are a lot of report from lower dose combined with other meds which also created very bad results.
2mg sound safe at this point. But should be the max dose for Cfs. Would be interesting to know why Martin went beyond that. Did it already lose effectiveness or did he hope for more at higher doses. Anyway, seems like the moment he went up, and the steady state set in around 1-2 weeks later, the positive effect was gone. So could also be dose problem.
On a personal note, I was an avid cyclist. This way I got a pudendus neuralgia. Which took an operation and still wasn’t good. After that it took 1 year on Morphin to erase the pain memory that was build up in the brain. So what I am trying to say, maybe 1 year abilify with terrible super strict energy management could save some Cfs ppl long term.
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Lorazepam is the only other drug that helps Martin and at the moment he is lowering his dose for some weeks. So I’m not really sure if he is now worse than before abilify.
I think because he wanted more than he already got and didnt think it would cause the drug to stop working. He is very hungry for life and i totally understand that, even if maybe that was causing it to poop out. On the other hand i read from people that only took 1mg or even less and it stopped working, too. It would be so much easier if we would know how it exactly works.
If i got it right, he was on 4mg at least for a month before it stopped working.
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I hypothesise that Abilify is working in two areas: one to reduce neuroinflammation/sensory gating etc, which is an "organic" benefit that won't produce a crash, and two a hyperstimulation that will cause a crash. That's how it feels anyway, when I'm on it. If I'm correct, then upping the dose too high will cause (2) and then a crash, which is unfortunate because it's also helping on (1). That would mean that there's a ceiling to its benefit. Early days though.
I would say it’s almost impossible to be super strict with energy management and pacing when you feel better. It’s actually torture to sit in your 1-BR apartment all day every day for months at a time when you feel more than well enough not to and don’t get PEM payback.
I’m doing a lot less than I could do now based on how I feel (so am pacing in that way), but I’m doing way more than being bedridden in bed all the time. I can even go outside for short walks and drive to the grocery store to shop now (so I don’t have to spend lots of money on delivery).
So no matter what I’m exerting way more than bedridden because some things as a human being you have to do if you can, otherwise it’s solitary confinement which I’ve been in for the last couple years almost all the time. I needed a break from solitary confinement.
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Abilify absolutely does not give you false energy. It just seems to target a major downstream dysfunction causing a lot of ME symptoms, but I can feel it’s not targeting something else central about this illness. Which is ok there are tons of FDA approved drugs that do the exact same thing.
And that central thing about my ME at least is affected by overexertion and other things. Abilify corrects in the brain or elsewhere one part of the dysfunction caused by this illness but not everything. But it’s not pushing you to overexert, to exert is a choice while on it because you just feel much better but not revved up like stimulants etc.
It reduces the negative physical symptoms not overevving any positive feelings to mask symptoms. Hope that makes sense.
BrightCandle
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For some reason since January my condition has improved. But one thing that Ron Davis said about those recover is stuck in my mind, all those that recover paced themselves, that is the only known route out currently. That and that alone is great reason to keep just sitting there and minimising your energy usage.
there are people who have not overexerted or crashed for years without getting better...