Aripiprazole - Abilify

ryanc97 said:
Well, that assumes patients have no minds of their own and cannot evaluate what is said to them.

By advice I mean perspectives.
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The forum rules do not allow asking for or giving medical advice

See this in the additional notes on the No medical advice rule:

4. Do not attempt to diagnose or recommend treatments to others
...but they may not diagnose or recommend treatments to each other, nor request such diagnoses or recommendations
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You may not request or offer suggested treatments, including suggesting changing dosages or stopping prescribed medication.
 
As many patients anecdotally report that the effects of Aripiprazole/Abilify do wear off after some time, I wondered if there's any comments in scientific literature or even just in talks or other oublic statements about that from the Drs who prescribe this medication.

I know that in Germany, Austria and the U.S. there are at least some Drs who prescribe Low-Dose-Aripiprazole for ME, but I never heard anyone of them talking about this despite it being a seemingly pretty common experience among patients.

So is there any acknowledgment of these experience among treating Drs. and/or researchers? Especially now that they're conducting this new study on the subject in Germany, it would be important to examine this phenomenon as well.
 
Silip said:
As many patients anecdotally report that the effects of Aripiprazole/Abilify do wear off after some time, I wondered if there's any comments in scientific literature or even just in talks or other oublic statements about that from the Drs who prescribe this medication.
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A doctor I have been seeing, who has treated ME/CFS for a quite a while, asked me if it "wore off". That's as anectodal as it gets.

I couldn't answer the question because I did not know if it worked in the first place. It motivated me to stop it and see what happens. The result is: absolutely nothing. Maybe I sleep a bit better since (I found it quite activating even at low doses, but without actually giving me more leeway for PEM). I was at quite a high dose (3mg).
 
Silip said:
So is there any acknowledgment of these experience among treating Drs. and/or researchers? Especially now that they're conducting this new study on the subject in Germany, it would be important to examine this phenomenon as well.
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Extremely anecdotal: To date, I have not tried LDA, but did see a doctor who recommended it and had a number of other patients taking it. Some time back, when he first mentioned it, I asked him about the potential for the drug to stop working (if indeed it did anything at all) and he was confident that with a sufficiently slow and cautious approach this could be avoided. For a number of reasons, I declined to try it at that time. A year later it was mentioned again, but apparently his experience had changed as he then stated that it "frequently" only works for a limited time. His recommendation had shifted to memantine.
 
DHagen said:
Extremely anecdotal: To date, I have not tried LDA, but did see a doctor who recommended it and had a number of other patients taking it. Some time back, when he first mentioned it, I asked him about the potential for the drug to stop working (if indeed it did anything at all) and he was confident that with a sufficiently slow and cautious approach this could be avoided. For a number of reasons, I declined to try it at that time. A year later it was mentioned again, but apparently his experience had changed as he then stated that it "frequently" only works for a limited time. His recommendation had shifted to memantine.
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It pooped out then tried a mini break of two months but it didnt work as the first time (wonderfull effects, im severe and i could eat with my family in a sofa, watch tv, work for two hours and above all did 1500 steps a day).
I want to try rxulti to see if it works with that molecule.
 
From another thread:

Jonathan Edwards said:
Anecdotal reports are always unreliable but I do get an impression that aripiprazole may be helping some people with ME/CFS. This would of course fit perfectly with a view of the disease steering towards dopamine D2 receptor involvement. I think it is very plausible that if this is the right track there might be a limited subset of responders. In Parkinson's there is only a subset of responders to dopamine-targeting drugs but the pathology is almost certainly the same for all. In RA there is only a subset that responds well to TNF blockade despite TNF being involved in all cases.

The answer here is not, I think, to try to select out a responder subset in advance, because it is likely to be very hard to predict. The answer is to include everyone with disease and do a large enough trial to pick up maybe 30% responders. That is not hard. The reason why trials have failed so far is almost certainly that the agent is irrelevant and there are no responders beyond 'placebo'.

So an aripiprazole trial in people just with CCC ME/CFS makes a lot of sense.

I wonder if a trial proposal was turned down because of poor design or maybe misguided justification. An intriguing thing about aripiprazole is that, as a drug for psychiatric conditions, it might be expected to held in suspicion by people with ME/CFS. The fact that it has come through as something for which there is enthusiasm may be significant. It would make sense if it is working on dopamine receptors, which can be relevant both to psychiatric conditions and to neurological conditions like PD.
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@Mij

Severe?

Fewer than 300 steps a day, bedridden the rest of the time, unable to watch TV or read a book, with sensitivity to sound and light.
I understand being skeptical about everything, but still, what it means to be severe is something that is pretty well understood on this forum.

I was prescribed the liquid formulation. I started with just one drop to see whether it would have any effect, and there is absolutely no doubt that it does.

There is not really much debate over whether it works or not: yes, it clearly works for a subgroup of patients.
The real questions are: why does it work for one subgroup and not another? And how can we make the effect last?

As @Jonathan Edwards or @V.R.T. have said, now that we have DecodeME, along with hundreds and hundreds of patient reports from people for whom it clearly works, isn’t it about time to run a proper trial ?
 
neophyte32 said:
There is not really much debate over whether it works or not: yes, it clearly works for a subgroup of patients.
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You may believe that and you may be right. However, we know how unreliable such reports are, in general, so for those of us who have not personally experienced an improvement in ME/CFS the claim has to be taken as on a par with such a claim about homeopathy or LDN or Brain Retraining. I agree that a trial is justified. But until then, the debate, or at least the uncertainty, must continue.
 
Jonathan Edwards said:
You may believe that and you may be right. However, we know how unreliable such reports are, in general, so for those of us who have not personally experienced an improvement in ME/CFS the claim has to be taken as on a par with such a claim about homeopathy or LDN or Brain Retraining. I agree that a trial is justified. But until then, the debate, or at least the uncertainty, must continue.
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I knew you were going to reply with that, and scientifically speaking, you are right.
This really should be a priority. As a severe patient, I can testify to how incredibly strange it is to suddenly feel better on just 0.20 mg of Abilify.
But my testimony — or even that of hundreds and hundreds of patients — does not really count as evidence without a proper trial.

There is one planned at Charité, but in my view it is very poorly designed and prepared. The starting dose is 1 mg, which is far, far too high.

But coming back to LDA, it is even broadly consistent with the DecodeME findings… so yes, this needs to be investigated, and quickly. And we also need to understand how to make the effect last, why it stops working in some patients, and so on.
 
In light of what seems (based merely on anecdotal information from pwME) like an increased recent interest in memantine, and the suggestion that memantine, particularly low dose memantine, may work to prevent or slow tolerance to other drugs (notably opiods), I wonder if there are any out there in the ME community who have been on both concurrently? Given the widespread reports of tachyphylaxis with LDA, this seems like it might be worth exploring (all the better if memantine should prove have some positive effect on its own, there are a few scattered positive reports online, but nothing that seems truly extraordinary).
 
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DHagen said:
In light of what seems (based merely on anecdotal information from pwME) like an increased recent interest in memantine, and the suggestion that memantine, particularly low dose memantine, may work to prevent or slow tolerance to other drugs (notably opiods), I wonder if there are any out there in the ME community who have been on both concurrently? Given the widespread reports of tachyphylaxis with LDA, this seems like it might be worth exploring (all the better if memantine should prove have some positive effect on its own, there are a few scattered positive reports online, but nothing that seems truly extraordinary).
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I tried memantine at one point because it is mentioned in this study, I’ve had good experiences with medications that reduce glutamate. I think I took 20 mg for about six weeks, but unfortunately, I didn’t notice any effect. I didn’t experience any side effects either.
 
Abilify is doing the bits for me in combination with modafinil. In fact its working so well that it outperforms modafinil because you get the reduction in fatigue without the increased heart rate! Also feel like modafinil just masks the fatigue but abilify actually improves the fatigue. It's hard to explain.

What is also good is that abilify increases appetite while modafinil suppresses appetite. So you can net out the effects with both drugs by alternating them.

So, all in all, believe Abilify-Modafinil alternating is a strategy to get the best out of both drugs while reducing the odds of tolerance. I would say since starting it in April or so, along with constant LDN, it has improved me enough that I decided to try and go back to work.
 
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Now, I wonder whether adding another Abilify alternative, like Rexulti or Vraylar, to alternate, might be even more effective. So instead of taking Abilify, you alternate between these two.

I will ask AI...

I think from reading anecdotes, it is generally a bad idea to take Abilify every day for long periods of time. You need to have breaks. That's the first thing. The second thing is that some people have had success swapping it out with another variant.

I believe that taking it everyday for months will eventually burn your tolerance out to the point where even a several month break won't fix it. Why do I say so? That's the pattern I observe from anecdotes.
 
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That’s what I’m planning to do. I took low-dose Abilify from April to December 2025, then had a two-month break, and restarted it in March. I’ve been taking it ever since.

My effective dose is actually very low, only around 0.20–0.30 mg. I’ve deliberately avoided increasing it too much because I don’t want to disrupt the receptors more than necessary.

I’m now going to taper off Abilify slowly. I managed to get Rxulti in liquid form in Switzerland, so my plan is to switch to Rxulti for a few months, then go back to Abilify after roughly nine months.

If things go well, I may continue alternating between the two in this way.
 
I too have had success with topamax, a glutamate lowering drug.

Im having success with regular dose abilify (though for treatment of psychotic type symptoms triggered by short term steroids)

Its improved sensory tolerance, orthostatic intolerance, physical functioning, pem, though im still severe. Quality of life has improved dramatically.
 
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