Aripiprazole - Abilify

Leokitten, I'm really glad that this helped you. I have another friend with ME who has similar sleep-cycle patterns and who is now going to ask her doctor about LD Abilify. Because of other medications I take, my sleep cycle is pretty normal--I fall asleep readily at bedtime and, while I feel like I haven't slept when I get up, I can still get up at a "normal" time (~8 a.m.). I think giving me a drug that might reduce my sleeping time might actually make my fatigue worse, though I guess I won't know that for certain unless I try it.
Thanks for sharing your experience!

 

As someone who may soon be trying low -dose Abilify, I have a question about the possible/hypothesized effects on the mitochondria. If ME does have as its root cause mitochondrial malfunction (and my PA and doc at Stanford offered this as their best theory for what goes on in pwME), and if Abilify is in some way "anti-mitochondria" (as I got the sense from a few other previous posts), how does that work? If something is harmful to the mitochondria, wouldn't that make ME symptoms potentially worse?

Another question for those who've tried Abilify and are finding it helpful: did you have issues with severe insomnia before trying Abilify? If so, did A make that symptom worse or better? Without a few meds I take at night with sedating effects (like Zanaflex, which I take solely to help my muscles relax enough so I can sleep --I think I'm in a chronic tired-but-wired state at this point), I do not sleep at night. At all. I tried not taking just one of my nighttime sedating meds (the other is Zyprexa, which I'll have to get off to try Abilify) a few years ago because at the time I thought maybe I'd gotten a physical addiction to the sedating meds and needed to let my body "reset" so I'd no longer need them. After two weeks of the insomnia, leg cramps and muscles spasms and (most worrisome to my GP) heart arrhythmia getting worse rather than better, my GP told me to restart the muscle relaxant because my body definitely needed the sleep.

So I'm wary of any medication changes that will make my tendency towards insomnia worse.

 

Whoa, wait--I missed something: olanzapine (which I've been taking since 2008, originally prescribed for MDD secondary to severe weight-loss post-surgery) shrinks people's brains?

 

Jaybee,
I am curious about your ME diagnosis. It seems very specific (to a non-scientist), and I'm wondering if you can explain the designation and how it was determined that you have a specific type of ME? Thanks!

 

@SunnyK

HLA risk alleles from this paper https://www.s4me.info/threads/intra...-study-2020-rekeland-mella-fluge-et-al.14925/

You can get HLA testing done through this company—they are based in the USA but can also send the test kit internationally https://www.bonemarrowtest.com/

 

Thanks, Jaybee--appreciate the info both about the alleles and related treatment study and also the testing company. If I may ask, what prompted you to get the testing done? (My ME specialist hasn't mentioned doing such testing, at least not yet, and it seems as though the testing is aimed mostly towards patients with blood cancers.)

Hope you are continuing to see benefits from aripiprazole.

 

No, I’m not on it currently. Was curious whether I had the risk alleles

 

Sorry I misunderstood.

 

Did the research compare brain atrophy rates to unmedicated controls with schizophrenia? Otherwise it would be hard to know if it was schizophrenia itself or antipsychotics that cause an increased atrophy rate over time compared to baseline age-related atrophy. Also I think all that research was done at antipsychotic dosage levels which I’m guessing for MDD you weren’t given such a high dose.

 

Also, just asking out of interest, seems quite unorthodox to prescribe an antipsychotic alone like olanzapine for MDD? Some antipsychotics are approved to augment/use in addition to a standard antidepressant, like Abilify, though at a much lower dosage (5 mg) than for antipsychotic use.

 

I think olanzapine isn't first line of defense for MDD, but at the time I was already on both escitalopram and buproprion. Also, I think olanzapine is more apt to be used for MDD in individuals with anorexia, which I've had a history of since age 19, since it can increase appetite. (At the time I was prescribed olanzapine, I was not having anorexic ideation, but I'd lost a lot of weight due to post-op pain meds taking away my appetite, and my experience is that weight loss, even when not caused by anorexia per se, affects my brain chemistry somehow [?] such that I'm more apt to fall back into eating-disordered thinking AND am more apt to fall into an MDD episode.)

 

Brilaroxazine Phase 3 results
Possible replacement/improvement over Abilify.

https://finance.yahoo.com/news/reviva-announces-positive-topline-results-113000157.html

@leokitten

 

I started a third cycle of low dose Abilify March 10th. It’s worked again for me. For those not familiar I did the first trial in 2021 then took a 6 month break and did a second cycle in 2022 and both worked it dramatically reduces (or covers up) my ME symptoms so I can function again. This time I took a much longer break mostly for reasons not related to ME.

I don’t know why I’m in the subset of people where it works each time after a break. During each cycle it works the best in the beginning and then slowly loses efficacy over a few months until I feel it’s not helping enough anymore and then I stop and take a break.

This time around the one difference is I used my very expired bottle of oral solution from 2022 which expired July 2023. So instead of the regular amount that worked well in the past 0.25 - 0.75 mg per day, I had to take 2-3 mg per day for a similar effect. It took a week to kick in again and this time it ramped up more slowly instead of the last two times where after a week or so of feeling nothing it would suddenly kick in. I read that unlike pills, oral solution/suspension really does go bad after having it open 6 months and definitely by the expiry date.

I’m waiting for a fresh oral solution to come hopefully next week and will report back if expiration and weak solution was indeed the reason for a difference this time or if it’s my body not responding to lower doses anymore. Don’t know that yet.

 

This time around I am not going to take it for months, because while I have no idea if it’s covering up symptoms or actually providing symptom relief, I don’t want to possibly cause any damage. I’m only going to take it for a month and have a little vacation now that I can move and drive and be social again.

 

Hi everyone I have a significant update - with the new bottle of Abilify I still need to take 2 mg to have a good effect! So this comes as a bit of shock/surprise to me, which means the very old bottle was still potent enough and the way my body has responded to it this third cycle is different than the first two cycles.

To summarize my experience again, the first time I took LDA I took 0.25 mg per day for two weeks and felt nothing until from one day to the next I pretty much went into remission, the effects were very strong, and I only needed 0.5-0.75 for months after. The second time I took 0.25 for only a week before the effects came on again strongly and suddenly and again only needed 0.25-0.75 for months after. Going higher than that never improved its effects.

This third cycle such a low starting dose did not work, I needed 2 mg per day to get symptom relief and the effects did not come on strongly, they creeped up more slowly and smoothly. LDA also felt less activating this time, I don’t have a much very early waking or restlessness side effects either. In addition, I also feel it’s effects are not persisting as long as the first two times (which was for months), after only one month now it feels like before on month 3 or 4, my ME symptoms are creeping back in. That being said I’ve done A LOT of exertion this last month I’ve been able to function well enough to go on a vacation and was able to drive, fly, and do enough physical activity on the vacation except exercise. I couldn’t go all out but really didn’t need to pace.

Though there is one major difference between my situation this time and the previous two times. Before I’d been on moclobemide 600 mg but this time I’ve been taking fluoxetine 60 mg per day. Could fluoxetine or any SSRI for that matter reduce Abilify’s effects or worse could this mean Abilify with each cycle is starting to not work? Ugh, I really don’t want to come off fluoxetine to test what’s going on it has a very long half life.

 

Thanks for posting in such detail @leokitten.
I am considering taking it so the detail is helpful. Have delayed starting so that I could adjust sleep meds.
Good luck.

 

Best of luck to you too. You should know in a couple weeks after starting whether it works or not

 

By placebo do you mean coincidental improvement or genuine efficiency of the power of belief? Because if it's the latter then I'm going have to ask you to cite evidence for that claim.

 

Some events basically strongly suggest it cannot be a placebo effect. First, if your ME never fluctuated to such an improvement ever before on its own and so suddenly (and coincidentally after taking LDA), or the fact that it can take 2 weeks for LDA to work and we didn’t know that beforehand, or what happened to me LDA worked for PEM, sleep, neurological, most symptoms except it has zero effect on my MCAS symptoms. Every cycle of Abilify has been that way. You can’t just believe it’s going work on a specific subset of your symptoms

 

Coincidental improvement / perceived feeling of improvement that may be temporary.