Aripiprazole - Abilify

Hi - I was prescribed Abilify by Stanford earlier this year. I was only able to take it for 5 days - it completely knocked me out, was almost nonverbal. Was a very low dose, but after 5 days Stanford took me off it and replaced it with Celebrex. Celebrex has been a game changer for me - major pain reduction.

 

Celebrex really helped when I was injured in a road traffic accident. Felt like I was living in a pain amplifier for years after that until Celebrex.

 

I tried.25mg abilify for five weeks. It improved my anxiety quite a bit which is a symptom of my ME. Brain fog and mood also a little better. Only slight difference with energy if at all.
It made me wake more in the night and made my stomach pain worse for first few weeks.
Been off it for a week. I would say it didn't make a significant difference. I may use it for anxiety though

 

Quite a few pwME that have taken Abilify found that the dosage required to produce significant benefits was different and required them to explore different dosages in order to find what worked best. For some people it was as high as 2 mg and for others it was a low as 0.25 mg.

 

An end of year update from me. I'm close to 18 months in, and Abilify continues to be effective. I take 0.25mg/daily. The cognitive gains I described a year ago have held and even expanded somewhat. No doubt strict pacing has been a factor in this too.

To be sure, I still have severe ME, and Abilify is no silver bullet. I continue to tolerate any physical exercise very poorly for example - even the shortest of walks risks PEM. But that I can even contemplate walking any distance at all, no matter how short, is a night/day difference from two years ago. I've gone from virtually completely incapacitated and bedbound to (at least outwardly) resembling an actual human being for short bursts of time, and that's something that I'd, following a decade+ of advancing illness, had never again deemed possible. So yeah, I will continue to take Abilify at 0.25mg/daily; it still is the only drug to ever work for "my brand" of MECFS.

 

Sorry if I missed you describing your experience somewhere, over these 18 months have you experienced any reduction in efficacy?

Was it working extremely well for the first couple months and able to shut down most ME symptoms followed by slowly creeping back in over a period of months?

For me, even after 6 months on it this second cycle it still produced significant benefits, for example it still prevented crashes and pushed forward my sleep cycle, but a number of other symptoms had slowly creeped back in. Then after having stopped it for three weeks it continued to produce the same benefit until I experienced a major crash and reverted to pre-Abilify baseline. I’m still there now back to fully housebound with extended periods bedbound and I get PEM or crash very easily, same as after finishing the first cycle. I will start Abilify again May 2023

 

If I had to quantify it, for me Abilify gave a sustained ~3-5% increase in my capacity to function and quality of life, undiminished over time. I know that doesn't sound like much, but for me it's the difference between being completely zombified around the clock and, with "aggressive" resting and careful pacing, enjoying fleeting spaces of time where I feel close(r) to normal. I never experienced the dramatic improvement that for instance yourself and Martin did; instead it's been a gentle, steady push.

I've kept the Abilify daily dose very low, raising it only by 0.05 from 0.2mg to 0.25mg. The severity of my symptoms fluctuates as it does for most of us, informed by pacing, PEM and auxiliary conditions like POIS I've spoken of elsewhere. But it's very clear that since starting Abilify my lows are less low and "highs" a little higher, a bit like a meandering graph the baseline of which was shifted upwards a few notches. This is what's enabled me to cautiously pick up language study again, enjoy daily casual conversations with those close to me, or sometimes watch a film. All very basic stuff I know, but mostly impossible for me pre-Abilify.

 

I realize I'm about 3 years late to this thread, but I wanted to respond since I've just been seen at Dr. Bonilla's Stanford clinic. I haven't yet tried Abilify, but the plan (once my psych gets me off Zyprexa, an atypical antipsychotic--prescribed years ago for depression in my case and which I've continued to take because it allows me to sleep at night--of the same class as Abilify) is this: to start at 0.1 mg twice a week, then 0.1 mg per day, then 0.2 mg, 0.4 mg, 0.5 mg, 1 mg, then 2 mg as the upper limit dose. Apparently there are a few compounding pharmacies who will make the drug at subclinical doses for much-reduced fee for Dr. B's patients.

 

I've been scanning through some other posts to this thread and am wondering if Abilify is the right treatment for me to try. I can get up pretty easily by 8 a.m.--not that I couldn't sleep longer (I never wake up feeling like I've had enough sleep), and my main sleep disturbance issue is insomnia. Have any of you who've tried Abilify had insomnia beforehand, and has the insomnia worsened?

Also, Dr. Bonilla's PA says they use Abilify for its anti-inflammatory properties--she didn't mention anything about sleep-cycle restoration. Does this jive with what others of you have read/experienced?

 

This seems to be the story for all these drugs: Abilify, naltrexone, whatever.
Maybe they think it sounds good, or distracts from them being basically psychiatric drugs.
As far as I am aware there is no meaningful evidence for it for any of them.

 

I was on LDN for a while when my primary-care doc thought maybe my fatigue was due to chronic pain at night (not that I noticed that). It gave me insomnia when I took it before bed, and taking it earlier in the day didn't do me a bit of good. It seems a number of people here have had some help with sleep-cycle issues with Abilify, but in the opposite direction of what I need.

And I'd like to see some research on Abilify having anti-inflammatory properties. As you say, these are psychiatric drugs, and those meds, even for the conditions they're approved to treat, are poorly understood, from what I've read and heard.

 

Yes, Trish, they told me immediately that it's experimental--not FDA-approved. My sense was that they try all new patients on this; my PA cited a "cohort study" in which 70% of patients had some degree of benefit from the drug. I don't know the specifics of what a cohort study is--obviously not rigorous like a double-blind study, since it seems no one is doing that for ME treatments?--and how much could be explained by placebo effect.

I do plan to remind my PA about my severe insomnia and ask specifically about that side effect of Abilify before starting it.

 

The problem with the study they did was they tried the drug before "thinking about doing a study". That means that the patients were not enrolled in a clinical trial. The patients were invited to take this medication that the doctors think could help but it is off-label. They may well have told their patients that they felt it could help them reducing brain inflammation and that many of their patients were improved (also known as conditioning).Then they made them come back after a while and assess whether it helped them or not, via a questionnaire. No ethics review. This was also an open-label "trial" which means no placebo, not randomized, the patients were picked and chosen to take the medication, and afterwards, in counting the patient in their review. It is a retrospective study, not a clinical trial.

https://translational-medicine.biom...ftlObPMdE__m0CwqPh7w65BYMsQQl3ZuxP8Jg0RTH4U24

 

Milo, I figured it was something like that--i.e., where the placebo effect could've played a big part. Thanks so much for explaining and clarifying, and for the link.

 

@SunnyK i found that low dose Abilify pushed my sleep cycle forward - made me tired much earlier and wake up much earlier. I believe most others reported this as well. My case of ME causes my sleep cycle to easily become inverted, where without sleep meds it can quickly go to sleeping during the day and up all night and get stuck like this. I never experienced this before ME. So it was a great added benefit that Abilify fixes this.

 

There was a Talk among Dr Bonilla and a group of Colombian Patients published on Facebook :

https://fb.watch/hZobWQRzd8/

He said there is a study showing that Aripiprazole decreases substantially cytokines in 4 weeks
( remember a study from Montoya : Cytokine signature associated with disease severity )

“ Probably the mechanism of action is through inhibition of inflammasome “

IT is an interesting talk. I am sorry I am not able to give you more details .

 

If it is a good thing to inhibit an inflammasome then it is likely to be more use using a drug tailored to doing that rather than some obscure psychiatric drug that just happens to do it a bit, if you are lucky.

This is idea that people should use drugs like this because someone has shown some weak effect on immune function in a test tube seems crazy.

 

I've always thought this too. I remember reading a study about the possible connection between the persistence of toxoplasma gondii in the brain and schizophrenia. The author's claimed that common antipsychotics (might have been olanzapine they referred to but i don't remember exactly) had an anti parasitic effect and that might explain why they treat the illness. I remember thinking, surely if those patients had a brain illness caused by a parasite we would have a drug better suited for that than something like olanzapine?! What's the chance that, of all the drugs we have, the optimal one for treating this infection just so happens to be the psychiatric drug you are already giving to the patients to turn off their dopamine circuits which also shrinks their brains and causes obesity as side effects?

It all seemed really weird that these psychiatrists would claim something like this and then just go on with their day as if nothing happened, same drugs, same everything. I think a lot of the time doctors don't even care about trying to make sense with their hypotheses.