Abilify- Stanford Clinic Patients

[wisdomSeeker17]

Note that antipsychotics are not the only class of drugs acting on the brain that have significant and permanent side effects. Lots of antidepressants, but especially SSRIs, are known to cause permanent sexual and emotional dysfunction, that remains even after stopping the drugs. See post-SSRI sexual dysfunction, which one study found occurred in 70% of patients taking SSRIs or SNRIs.

The above paragraph seems to be about permanent side effects. However, the cited 2010 paper, "Antidepressant-associated sexual dysfunction: impact, effects, and treatment" makes no such claim. Instead, it focuses on symptoms of sexual dysfunction and how they vary by antidepressant drug. For example:

The differences between drugs are summarized in Table 1 and were as follows: incidence of sexual dysfunction with SSRIs and venlafaxine (an SNRI) were high ranging between 58% and 70% –
fluoxetine (57.7%), sertaline (62.9%), fluvoxamine (62.3%), venlafaxine (67%), paroxetine (70.7%), and citalopram (72.7%). This compared with a much lower incidence for the newer 5-HT2 blockers (8% nefazodone and 24% mirtazapine).
...
Clayton et al,13 in an adult outpatient population (4534 women and 1763 men) receiving antidepressant monotherapy, reported rates of sexual dysfunction as follows: mirtazapine and venlafaxine extended release were associated with higher rates (36%–43%), followed by nefazodone (28%), bupropion SR (25%) and bupropion IR (22%).

To be sure, there have been reports of a few cases claiming persistent sexual dysfunction post-discontinuation of SSRIs in databases of adverse drug effects: For example, a 2022 scoping review found 86 cases reported in the Netherlands adverse drug database. However these entries are typically raw unvalidated data, meaning that the cases have not been evaluated for other more likely explanations– from obesity to cholesterol, diabetes, depression, other medications – so the number of actual cases is likely smaller. And without knowing the denominator, i.e., the number of former-antidepressant users and the percentage of those with side effects who fill out one of these reports, it is impossible to know whether the rate of persistent sexual dysfunction post-discontinuation is, say, 2% or 0.00002%. To complicate it even further, one would have to subtract from that the nocebo response -- the percentage of sexual dysfunction post-placebo! (I mention this because it's now been found that the "pooping out" phenomenon, in which an antidepressant loses its effectiveness, is most often due to the loss of placebo response.

we estimated the proportion of relapse attributable to the loss of true drug response versus the loss of response attributable to the nonspecific effects of treatment: The relapse rate in placebo responders was 24.1%, whereas the relapse rate in antidepressant responders was 7.4%. Two different methods of estimating relapse suggested that the majority of relapses in patients taking antidepressants during continuation treatment could be attributed to relapses occurring in patients who were not true drug responders.

 

[Springbok1988]

Today was my 7th day on Abilify. I’m taking 0.25 mg a day. I have been growing more depressed with each day and I’m wondering if anyone else has experienced this. I’m not sure if the depression will ease if I keep taking it or if this medication is just not for me.

 

[Judee]

I’m not sure if the depression will ease if I keep taking it or if this medication is just not for me.

There's Abilify for ME FB group too in just case no one answers your question here.

 

[Jessie 107]

Today was my 7th day on Abilify. I’m taking 0.25 mg a day. I have been growing more depressed with each day and I’m wondering if anyone else has experienced this. I’m not sure if the depression will ease if I keep taking it or if this medication is just not for me.

I have been on Abilify for 3years and did not experience any depression when starting, or since.

 

[percyval577]

If I stop it all this suffering will be for no reason.

Also, as this med has paradoxical mechanism of action in micro doses not sure if it's better idea lowering the dose or titrating it up.

I would certainly not rely on paradoxocal mechanism. If it feels bad, it may well be indeed bad here. And what then?

Another story would be, if it were an ambivalent effect.


Lowering the dose might be worth a try. Here I myself do often stop any intake of supps suddenly, and spy the stuff ot, when it suddenly turns bad after haveing been good.

Anyway, I think, never neglect your feelings.

 

[YippeeKi YOW !!]

Today was my 7th day on Abilify. I’m taking 0.25 mg a day. I have been growing more depressed with each day

Abilify, as an antipsychotic med, will have an effect on your brain and CNS, even in small doses. It may not be for everyone, tho it's been known to help some ME-ers. It's back to the old saw, the one about not verything will help everyone, and some things will only help one or two.

I think the advice to cut your dose and see if that helps (I apologize to the poster here, too brain fogged to remember even tho I just read it ) is good.

If the depression continues, you might want to stop gradually (all psych meds have immediate effects that need to be cycled off carefully, even after ust a few days) and see what that produces, and then swallow hard, and try it again on a lower dose than your original attempt.

Anyway, I think, never neglect your feelings.

TOTALLY agree. If it makes you feel worse, don't think 'herx", think, " ....maybe not for me, more info/trialing needed ...." then test it out by lowering dose or going off for a bit.

 

[Mimicry]

I started low dose aripiprazole (0.7 mg) four days ago and so far the most pronounced side effect has been nausea. I'm really hoping it goes away in a couple weeks because I don't need any additional nausea (I already have migraines and gastroparesis!). For the first two days I felt feverish and achy, but that seems to have passed (and who knows, I might actually have had some kind of bug, because my throat has been sore on and off for three weeks).

I'm interested in seeing if it does anything to my chronic migraines. Those also have a strong brain inflammation component.

 

[Treeman]

My wife has long covid, severe tried abilify and has had success. She stopped for a short time and within a couple of days the positive effects wore off. Once she started again the positive effects came back after a few days.

Her activity went from 2.6 hrs per day to 5.2 hrs per day.

Feedback. My wife stoped taking abilify after several months and maintained the gains she had achieved.

I'm not sure why, it could be that she just naturally improved.

 

[Andryr]

Feedback. My wife stoped taking abilify after several months and maintained the gains she had achieved.

I'm not sure why, it could be that she just naturally improved.

Congrats! Some questions I am asking because I am about to try aripiprazole:
1. What was the reason she stopped?
2. What was her dosage?
3. What is her current level (mild/moderate)?
4. What symptoms of Long Covid she had had before she started Abilify?
4. What positive effects she has achieved other than more hours of activity?
Thx.

 

[Treeman]

Congrats! Some questions I am asking because I am about to try aripiprazole:
1. What was the reason she stopped?
2. What was her dosage?
3. What is her current level (mild/moderate)?
4. What symptoms of Long Covid she had had before she started Abilify?
4. What positive effects she has achieved other than more hours of activity?
Thx.

1. She just wanted to see what would happen.

2. 2mg a day, started on 1mg and worked up after a few days.

3. She went from severe end of moderate to middle of moderate

4. Lots of symptoms, severe fatigue, brain fog, pem, etc. She also has a ME/ CFS diagnoses.

4 (5?). A reduction in the above symptoms etc.

Good luck.

I tried abilify but achieved nothing from it? I have ME/CFS too. Low dose amisulpride was more mildly beneficial for me.

 

[Judee]

2g a day, started on 1g and worked up after a few days.

do you mean mg?

 

[Treeman]

do you mean mg?

Yes, sorry. I'm always doing that, doh!

 

[Judee]

Yes, sorry. I'm always doing that, doh!

It's the brain fog.

 

[gm286]

Short update to say I am back on Abilify after a year off. Conservative approach with one 0.25mg capsule per day. Appear to gain ever-so-slightly in weight, though perhaps this was expected. Immediately noticeable improvement in vitality and energy.

 

[Dude]

https://www.mdpi.com/1422-0067/24/10/8713

This new study might explain (just my theory) why Abilify works for some People. If BH4 (Tetrahydrobiopterin) is elevated in Mecfs patients, it produces more dopamine.

Abilify acts as a dopamine partial agonist, meaning it binds to dopamine receptors in the brain and can both increase and decrease dopamine activity, depending on the brains individual needs. However, in general, Abilify has an antagonistic effect on dopamine receptors, which means it blocks the action of dopamine.

 

[hopefulalligator]

Well, we do know that abilify can stop working in many patients. I've never heard of anyone being able to pick up using it again.

Funny, as one of the people who is ultra-careful using abilify happens to have his father working as an ME Researcher (very well known) at Stanford.

I know that in TX it's almost impossible to get new prescriptions because the doctors themselves are so afraid of losing their licenses. This fear is real and crosses the line in all specialties. I do think the FDA now understands that it left good doctors with their hands tied during the fentanyl crisis. Special workshops were even held telling doctors about how not to lose their licenses. This was not fair to either the patient or the doctors.

Things seem to be very slowly loosening up again....but it's going to take awhile. Yours, Lenora

how do you define "ultra careful using abilify"?

 

[lenora]

Hello @hopefulalligator....abilify doesn't help everyone, but then you know that.

The young man I'm talking about used it only for ambulance rides to and from the hospital. This info was gleaned about 2 years ago, so things may have changed.

Personally, I don't think I'd just ask any doctor for abilify.....my own neurologist died just a few mos. ago and he didn't want me on. He died before I had a chance to find out why. Definitely check around with people who have tried the drug and find out their experiences. It may help you to make up your mind.

If I were younger, I may try harder to find a doctor to prescribe it. My ME has changed a few times over the years, but then I also had FM with it. We're all such individuals. Good luck. Yours, Lenora

 

[Jackb23]

Sadly, if I had only tried this before rTMS it likely could have helped me. I tried it after rTMS and it while it did increase my energy and mood, I had a severe reaction that lasted for about a week.

I think I have really limited what I can do therapeutically with all the brain treatments that I have done be it rTMS, neurofeedback and VNS. Ketamine also wasnt great.

 

[leokitten]

If nothing treatment wise comes from the ME or LC research communities maybe these next-gen drugs in clinical development right now could show some efficacy in ME/CFS like low dose Abilify did for many. Both next-gen drugs do not have almost any of the safety issues and side effects that exist with current antipsychotic drugs.

Brilaroxazine is a new dopamine-serotonin modulator and stabilizer in phase 3 trials for schizo that is better designed than Abilify and other latest gen drugs because it has virtually no off-target effects. They will also start trials for MDD, ADHD, BP, psoriasis (topical), pulmonary arterial hypertension (PAH), and idiopathic pulmonary fibrosis (IPF) and possibly more indications because the drug has shown potent anti-inflammatory effects in the brain and peripherally. It was granted FDA Orphan Drug designation and fast track for PAH and IPF, two terminal diseases for which there’s no current effective treatment and patients only live a handful of years after diagnosis. In phase 1 and 2 trials and other studies this drug has shown none of the cardiometabolic, endocrine, weight gain, or other off-target issues that plague all current antipsychotics, and it had a 98% reduction in extrapyramidal symptoms compared to drugs like Abilify.

Ulotaront is a different class, the first TAAR1 receptor agonist, a recently discovered target that plays an important role in physiology and multiple diseases, and it’s in clinical trials for multiple indications right now, including schizo and other neuropsychiatric and looks like they will also investigate it for obesity as TAAR1 interacts with and increases expression of GLP-1. Ulotaront doesn’t directly target dopamine receptors so it also showed none of the off-target issues that current drugs have, though they are doing more safety studies for the FDA because it’s an entirely new class of drug.

Both these drugs show clearly that there is often little useful divide between neurological, immunological/inflammatory, metabolic, and neuropsychiatric diseases. Their pathophysiologies can interact and overlap in very fundamental ways. This is why I believe no one should think ME/CFS could not ever be effectively treated by a neuropsychiatric drug, because many of these drugs aren’t just neuropsychiatric they are multimodal.

We will probably never know, but for those patients for whom Abilify had such a pronounced but temporary effect on ME symptoms (myself where it has worked twice), it could’ve really had a partial modifying effect on the pathology of ME, just not enough.

 

[leokitten]

To give some reference, what I generally think when I see that someone tried Abilify or whatever other CNS drug and stopped after only a few days because of side effects, you shouldn’t even bother with most any CNS drug if you don’t expect there will possibly be some nasty side effects in the beginning, any psych would tell you the same.

If you look at the personal experiences and online reviews of people taking almost any psychotropic drug, look at antidepressants for example, you will see for those for whom they work the reviews virtually all begin with “it started with weeks of side effects” followed by “side effects fell away and suddenly everything is amazing and my depression is gone” with other quotes like “don’t let the side effects stop you from getting relief you just have to push through the beginning and it will get better.” You see this over and over again.

I’m not saying this is the case for everyone, to each their own and I understand people have their own reasons. But with neuropsychiatric drugs that alter brain neurotransmitter levels, agonize and antagonize receptors, and alter brain pathways and connectivity, there is almost always a difficult adjustment period in the beginning. That is the norm and is not necessarily a bad thing and not necessarily doing any damage. Your brain and body are getting used to it.

I know, please don’t clap back, this isn’t the case for everyone, I just want people to know that CNS drugs pretty much always means lots of side effects in the beginning and it can last for weeks, and these are for drugs that really work in those patients that have terrible side effects in the beginning.