Aripiprazole - Abilify

Shinygleamy said:
Is there any long term issues taking 2.5mg of abilify. I feel it's made my sleep more restorative, and rather than being stuck thinking about doing something I can just do it. Wondering if the benefits are worth the possible long term side effects.
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My sleep got close to normal with Abilify the first couple months. But like it’s other astounding effects it slowly started losing efficacy over months after that. I was in tears at the beginning because I was sleeping almost like pre-ME and had totally forgotten what that felt like.
 
As the effect weaned off some months ago, I had trouble stopping Abilify without getting worse sleep. But now it went ok. So after a good pause now, half a year maybe, I can try again.
But I wonder, @leokitten you seem to want to try in alternating on and off Abilify, but do you think the same about the ketogenic diet? (As that too, caused big improvement some months, and then not)
 
benji said:
As the effect weaned off some months ago, I had trouble stopping Abilify without getting worse sleep. But now it went ok. So after a good pause now, half a year maybe, I can try again.
But I wonder, @leokitten you seem to want to try in alternating on and off Abilify, but do you think the same about the ketogenic diet? (As that too, caused big improvement some months, and then not)
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I will try Abilify again in May

Ketogenic diet did cause a sudden and very substantial improvement in many of my symptoms but not nearly as broadly or as good as Abilify was.

And keto required so much more work and energy to maintain. Abilify vastly improved or made nearly disappear almost all of my symptoms except gut irritation and itching at night (which I attribute now to MCAS which I didn’t realize I had all along until last year). Keto also started losing improvements faster than Abilify.
 
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I’ve been writing about my experience on starting a second cycle of low dose abilify on PR. Took a more than six month break from it after stopping the first cycle.

Started almost two weeks ago. So far I am feeling very lucky and counting my blessings, because it’s appears to be working pretty much the same or similar as I remember it was the first time. Though this time it’s worked significantly faster when starting on the same dose, I already started responding after a week in instead of no response the first time until about two weeks in. It was a partial response this last week where I felt so much better especially after the morning but was still getting some of my typical morning grogginess + hungover + hit by a truck + flu nausea after waking up. It has fully gone away as of this morning even though I exerted a great deal every single day the past week, there’s no payback anymore.

There is really something to this medication. For my subset of ME (and possibly also due to my specific genetic profile) a very low dose of this medication can reliably and reproducibly cause ME symptoms to completely melt away, albeit temporarily for a few months.
 
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I recently finished my second cycle on low dose Abilify. It worked pretty much the same as the first time, except for differences right at the beginning I described above, and the honeymoon period with basically zero ME symptoms was a bit shorter than the first time.

But the period after that it worked exactly the same as the first time, where it significantly reduced ME symptoms in a consistent but with slowly decreasing effect over time. Will start third cycle in 5-6 months.
 
And I know this isn’t absolute proof that this isn’t placebo effect, but when I stop taking low dose Abilify it continues to work in the same way as before I stopped for weeks after.

The first time, it continued to work for 2-3 weeks and my ME symptoms came back to full baseline in a progressive manner in the weeks after that. This second time, it continued to work for approx 3 weeks after stopping and then my ME baseline came back very rapidly right after.

I’m not sure how my “belief” that it’s working could cause this phenomenon, as I stopped taking every day and have no idea exactly when ME symptoms will come back.
 
leokitten said:
I’m not sure how my “belief” that it’s working could cause this phenomenon, as I stopped taking every day and have no idea exactly when ME symptoms will come back.
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It keeps working after cessation because it has a very long half life—it takes 2-3 weeks to leave your system.
 
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Trish said:
Thanks for the update @leokitten. It's good to hear it worked for you again at least for a while. Do you know whether a double blind clinical trial is planned?
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No idea on a trial, and given that this looks to only work in a subset, then as many have stated here and elsewhere until we figure out how to differentiate subsets then it’s likely any drug that would work in a subset will fail unless there is very careful and likely expensive trial design.
 
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I’m sure it’s been said here many times, but bears repeating that LC will hit the same roadblocks and walls regarding treatments and trials. Without any understanding, without knowledge of subsets or indeed even different diseases with similar symptoms, LC and ME drug trials are basically doomed, and all that will happen are patient and doctor experimentation with anecdotal reports of significant effects.
 
What would a good aripiprazole trial look like?

leokitten said:
No idea on a trial, and given that this looks to only work in a subset, then as many have stated here and elsewhere until we figure out how to differentiate subsets then it’s likely many drug trials that would work in a subset will fail unless there is very careful and likely expensive trial design.
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One way to begin to test it might be to take the group of people diagnosed with ME/CFS who have been taking aripiprazole and believe that it is working for them. Then, have a washout period, and then a blinded crossover trial. If aripiprazole can be shown to have an effect over placebo for the people who think it is working for them, then bigger trials could be done.

I think that could work - are the side effects such as increased appetite clear enough that they would make the blinding somewhat ineffective? An objective outcome would be good - steps etc, but the trial would need to be quite long - maybe 4 months, and use the last month of activity as the outcome.

@leokitten reports that the benefits from aripiprazole are transitory, wearing off after a few months. If that's correct, then I think it would be very difficult to separate out the effect of aripiprazole from a placebo effect. I've seen people with ME/CFS choose to have a higher activity level for a while and feel ok, only to deteriorate after several months at that higher activity level.

Perhaps a series of 2 day CPETs on and off aripiprazole could be useful? Although that would be using something we aren't sure about to measure an effect that we don't know....


leokitten said:
I’m sure it’s been said here many times, but bears repeating that LC will hit the same roadblocks and walls regarding treatments and trials. Without any understanding, without knowledge of subsets or indeed even different diseases with similar symptoms, LC and ME drug trials are basically doomed, and all that will happen are patient and doctor experimentation with anecdotal reports of significant effects.
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I feel a bit more positive. If the effect of a drug is quite significant on a reasonably sized subset, I think it would be noted by a good researcher.
 
Hutan said:
What would a good aripiprazole trial look like?

One way to begin to test it might be to take the group of people diagnosed with ME/CFS who have been taking aripiprazole and believe that it is working for them. Then, have a washout period, and then a blinded crossover trial. If aripiprazole can be shown to have an effect over placebo for the people who think it is working for them, then bigger trials could be done.

I think that could work - are the side effects such as increased appetite clear enough that they would make the blinding somewhat ineffective? An objective outcome would be good - steps etc, but the trial would need to be quite long - maybe 4 months, and use the last month of activity as the outcome.

@leokitten reports that the benefits from aripiprazole are transitory, wearing off after a few months. If that's correct, then I think it would be very difficult to separate out the effect of aripiprazole from a placebo effect. I've seen people with ME/CFS choose to have a higher activity level for a while and feel ok, only to deteriorate after several months at that higher activity level.

Perhaps a series of 2 day CPETs on and off aripiprazole could be useful? Although that would be using something we aren't sure about to measure an effect that we don't know....

I feel a bit more positive. If the effect of a drug is quite significant on a reasonably sized subset, I think it would be noted by a good researcher.
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Sorry I've been in a crash for the last week. I think in general these are all great ideas, I'll say though here what I said on PR:

While I don’t think Abilify is a treatment for many, its astounding effects on some people, even those for whom it stopped working, really should give researchers some clues as to the biological basis of ME, or at least its downstream biological effects which are causing some major symptoms.

I don't think low dose Abilify would be a good approved treatment for my case and subset, to really help for a few months and then need to take a constant break for 5-6 months and revert back to my ME baseline would never get FDA approved and isn't a worthwhile path to pursue. I think the subset of pwME where it seems to help consistently at least anecdotally seems to be very small.

I think low dose Abilify really could give researchers significant clues as to what might be major downstream pathways that are effected by ME that cause some of the most debilitating symptoms. ME researchers need all the help they can get right now because we've been waiting for many years.... decades... and we don't really know that much more today that is of consequence than we've known even 20 years ago.

I totally expected Abilify wouldn't produce temporary but lasting improvement the second time I tried it and and I would be in the subset where it worked amazingly well the first time and wouldn't work again, but it did work again and in a similar way to the first time. But as the months go by taking it my ME symptoms creep back in until I feel it's worth it to take a break even though when I revert to my previous ME baseline a few weeks after stopping I realize it was still helping a lot, though I'm afraid to take it continuously for fear of it losing it's effect completely.

Maybe low dose Abilify is simply a long acting stimulant-like drug and stabilizer of dopamine and serotonin pathways which become very much dysregulated by ME and this dysregulation causes many of the neurological core symptoms. Maybe low dose Abilify is causing a positive correcting effect on some global cellular metabolic dysregulation caused by ME and this helps brain and immune system function to improve core symptoms, at least temporarily.
 
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Thanks for that thoughtful analysis of the situation with low dose Abilify, @leokitten. Sorry to hear it's stopped working again for you.

I agree if it only seems to have lasting positive effects on very few, it isn't worth doing a full trial of it for undifferentiated pwME. I hope, as you suggest, it might provide some clues for people trying to get to the bottom of the physiology of ME/CFS.
 
Trish said:
Thanks for that thoughtful analysis of the situation with low dose Abilify, @leokitten. Sorry to hear it's stopped working again for you.

I agree if it only seems to have lasting positive effects on very few, it isn't worth doing a full trial of it for undifferentiated pwME. I hope, as you suggest, it might provide some clues for people trying to get to the bottom of the physiology of ME/CFS.
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I think all of us patients can strongly agree that some of the most central and debilitating symptoms are purely neurological - fatigue, inability to withstand much stimulation, cognitive dysfunction, unrefreshing sleep, autonomic dysfunction, tinnitus, ataxia, visual blurring, etc.

At least for me, getting close to 10 years with ME, the immune system dysfunctional symptoms which were very strong in the beginning have tapered down quite a lot, and most of the symptoms I'm left with are the neurological ones which are really utterly debilitating and have gotten worse over the years. Something very wrong is going on in my brain and brain stem! :(
 
Trish said:
I agree if it only seems to have lasting positive effects on very few, it isn't worth doing a full trial of it
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But the purpose of doing a clinical trial is to find out whether this is true!!

Also if ~25% ( or less) of patients can get a huge permanent (non-pooping out) boost from Abilify then that is a huge and very important finding.

There are people on Abilify for 3+ years with no poop out.
 
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Jaybee00 said:
But the purpose of doing a clinical trial is to find out whether this is true!!
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Yes. I think it is particularly needed if Stanford is still prescribing Abilify to new ME/CFS patients.

Jaybee00 said:
Also if ~25% ( or less) of patients can get a huge permanent (non-pooping out) boost from Abilify then that is a huge and very important finding.
There are people on Abilify for 3+ years with no poop out.
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Like I said, there could be a trial done on those who think that they are getting sustained benefit. How many people do you think there - would there be 20? The ME/CFS clinicians at Stanford must know; perhaps we could ask them? Who are the clinicians prescribing Abilify for ME/CFS patients?

If there are people getting a sustained benefit, more work could be done to work out what is different about the responders. If there aren't, people can stop taking a drug with significant side effects, and we could get some solid knowledge so patients don't have to wonder if Abilify would help them.

leokitten said:
stabilizer of dopamine and serotonin pathways which become very much dysregulated by ME
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Do we have any evidence for this?
 
@Hutan no direct evidence behind these educated guesses connecting its pharmacology to main ME symptoms… these are Abilify’s known primary targets, for which there are many papers showing where it binds and how it’s believed to function. It strongly binds to and stabilizes dopamine and serotonin neurotransmission and at the low doses it also upregulates dopamine neurotransmission. Though like with many drugs researchers aren’t certain exactly all the ways it produces it’s effects, but the have a lot of evidence suggesting how they think it does.
 
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