Abilify- Stanford Clinic Patients

[leokitten]

My psychiatrist offered to start me on a anti depressant next to low dose abilify. I might give that a try. As I believe the energy benefits would be worth keeping if I could get rid of the depressive side effects.

I agree, moclobemide didn’t have much of any effect on core ME symptoms after taking it alone for 2-3 months, BUT taking with Abilify seems to have a good synergistic effect. I honestly think too that taking a serotinergic drug helps to reduce tolerance to Abilify, it might reduce Abilify’s effect a little but at the benefit of reducing risk of tolerance.

 

[pattismith]

Interesting piece about dopamine reservoirs and receptors outside the brain.

The Effects of Dopamine and Antipsychotic Drugs on the Body’s Ability to Respond to Insulin

Maybe, just maybe, Abilify’s positive effect on ME has nothing to do with dopamine-serotonin system stabilization in the brain but some counterintuitive positive effect it has on ME metabolic dysfunction.

Hmaybe. But why then the tolerance? And why does this tolerance also occur if you don’t take it low dose for ME but for depression

Pure speculation here:

Antipsychotics can induce insulin resistance.

Maybe Abilify tolerance could be linked to insulin resistance in some part of the brain?

 

[5vforest]

Anecdotally, from what I’ve seen going higher than 1-2 mg does nothing more for ME other than increase side effects. It’s very clear what we have IS NOT depression, nor psychosis or schizophrenia (for those reading this wondering if ME is psychiatric no it’s not!) because higher doses would clearly help more for these conditions. For so many pwME I’ve read their testimonials going higher doesn’t work and I think actually decreases the time to tolerance.

I would go as low a dose as possible that works for best benefit. Generally no more than 1 mg maybe in some people 2 mg but most people I think 1 mg is it.

Also beware that comparing to the first 1-1.5 months there’s a lot of relative bias there, because you went from feeling really terrible to having a great improvement, and then as time goes by I don’t think the improvement decreases 50% it’s a lot of this relative bias that now you are used to it more. I agree the absolute improvement isn’t as good as the initial period, but at least in me it’s not 50% of what it was, more like 70-80% maintained. You have to subtract that relative bias you experienced.on

I was actually going to mention the relative bias too. I have no way to know, other than the objective data about how much I am sleeping.

anyway, I might just stop entirely as 1) I am still pursuing other treatments , 2) even if I’m getting a 20% boost, this doesn’t really help anything for my situation, and 3) I am pretty sure I have a different disease than most of the people that are helped by abilify. (I have written about this in my personal threads.)

 

[leokitten]

I was actually going to mention the relative bias too. I have no way to know, other than the objective data about how much I am sleeping.

I think sleep quality and sleep time is a good objective measure, so in your case what you are experiencing is likely not partially due to relative bias

 

[5vforest]

Yeah, to be clear: my sleep quality was awful when I started Abilify, but that was correlated with an increase in energy and I was way less sleepy during the day, despite sleeping very little compared to normal.

 

[TinaYesen]

Okay, so I titrated my Abilify up every two weeks as suggested. I felt nothing at 0.5mg. At 1mg it's been helping a bit. At 1.5mg it was intolerable.

Good at 1mg: At 1mg I feel more alert, less brain fog, and mornings are slightly easier to get my mind and body going, and it seemed (from my 2 week trial) that my average PEM went from 7 days to 2 days. I'll have to keep an eye on this. I did have to increase my sleep medicine (XYWAV) dosage to get a solid 6.5 - 8 hrs sleep per night.

Bad at 1.5mg: 1.5mg was not good for me, as mentioned by others, the side effects outweighed the benefits: Bad insomnia, sleep fractured by waking with chills, sweats, nightmares, and vivid dreams, worsening tremors/shivers, even shaking lips.

My sleep medicine stopped working at 1.5mg Abilify, and I started waking every 1.5 - 2 hrs throughout the night. I was only getting 5.5 hrs of sleep total on the highest possible dose of my sleep medicine. Worse, the 1.5mg Abilify alone or in combo with increased sleep medicine triggered a migraine. And I felt "crazy," like so awake I can't close eyes, but shaking and sweating from exertion, and I couldn't rest off my PEM because the Abilify makes me so wide awake. It was a horrible feeling.

On 1.5mg I am more alert in the morning and overall, but the horrible side effects make 1.5mg intolerable for me.

In summary: I'll be sticking with 1mg here.

Question, I know some compound themselves, but if I wanted to try 0.9mg, any recommendations on affordable compounding in the U.S.? I'm so sorry if I missed a post.

 

[sb4]

I'm around 5 weeks on Abilify. The first 5 days or so my sleep was ruined, after that my sleep returned to normal, possibly slightly better. I feel less wired and tired on the drug but thats all I have really noticed. I think I feel better on it, but my improvements are no where near that of some others using this drug. Maybe it's because I'm trying to treat autonomic issues and not ME?

I am taking 1.25mg once ever other day so 0.625mg daily.

 

[Martin aka paused||M.E.]

I'm around 5 weeks on Abilify. The first 5 days or so my sleep was ruined, after that my sleep returned to normal, possibly slightly better. I feel less wired and tired on the drug but thats all I have really noticed. I think I feel better on it, but my improvements are no where near that of some others using this drug. Maybe it's because I'm trying to treat autonomic issues and not ME?

I am taking 1.25mg once ever other day so 0.625mg daily.

Some need a higher dose to notice anything. You might want to increase it.

 

[sb4]

Some need a higher dose to notice anything. You might want to increase it.

You might be right though I am hesitant to do so. Perhaps higher dose leads to tolerance?

 

[Martin aka paused||M.E.]

You might be right though I am hesitant to do so. Perhaps higher dose leads to tolerance?

I don't think that it has anything to do with it... Some ppl experience tolerance at 0.25... But I can't know it for sure

 

[Benji]

I am coming here, as it is more life in the Abilify discussion here than on science for ME, and i have an ancient account here too.
I started Abilify in february/mars and I had good improvement. However in doses of 2mg it stopped working. but as I went down again on the doses, the benefits came back. And I found “my dose” to be between 0,5mg and 0,75mg.
But then after a while I got worse again. It could be Abilify stopped working, or it could the pfizer vaccine, it was the day after the vaccine that the deterioration came. That is more 6 weeks ago now, and I think that I hopefully finally am beginning to be better again. Two days now. Hoping now that it was vaccine worsening that now are through. I have heard more patients getting better from the vaccine, and that it lasts some and up to 6 weeks. Perhaps I just had the oopposite effect.

 

[TinaYesen]

And I found “my dose” to be between 0,5mg and 0,75mg.
But then after a while I got worse again.

I fear this. I fear I exert myself more on Abilify and it's just hiding my PEM so that it will come rearing its ugly head in full force when/if I go off it.

Any progress on us knowing if Abilify is truly helping some nerve or brain inflammation? Or is the side effect of insomnia just making us feel more alert? I'm unclear on the science we know.

Edit:typo

 

[Martin aka paused||M.E.]

I fear this. I fear I exert myself more on Abilify and it's just hiding my PEM so that it will come rearing its ugly head in full force when/if I go off it.

Any progress on us knowing if Abilify is truly helping some nerve or brain inflammation? Or is the side effect of insomnia just making us feel more alert? I'm unclear on the science we know.

Edit:typo

Its real energy but for some it stops working. That has to do with the physiology of every single one. Not the dose or PEM or anything else. I read a ton of stories bc I wanted it to work again and all those factors really don't seem to matter. Pharmacokinetics and pharmacology itself are very complex and tolerance is not fully understood (occurs often in psych drugs - just at see antidepressants)

 

[Rvanson]

This unusual dose-dependent reversal from agonism to antagonism relates to amisulpride's activation of the presynaptic autoreceptors:

I found this paper:


You might also like to read the article Amisulpride, the Wonder Drug from France! which I posted in the very low dose amisulpride thread. That also talks about the different effects of the very low-dose, low-dose and normal-dose regimens.


I believe that this also applies to Abilify (but I am not entirely sure now, as I cannot seem to find a paper that indicates the reversal of effects at different dose levels).

This paper says:




There are indeed significant risks involved in normal-dose antipsychotics, such as the developments of extrapyramidal symptoms. And even for low-dose amisulpride, which you might expect would be largely exempt from these risks, there was one case report of a patient given low-dose amisulpride (100 mg daily) for depression developing extrapyramidal symptoms.

However, I am taking not the low-dose regimen, but the very low-dose regimen (I take just 12.5 mg of amisulpride daily).



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.

I feel safer taking very low-dose amisulpride than I would taking an SSRI.

The only two medications for depression that have a low-history of causing sexual issues are Wellbutrin and Mirtazapine, neither of which is an SSRI or SNRI.

 

[leokitten]

I fear this. I fear I exert myself more on Abilify and it's just hiding my PEM so that it will come rearing its ugly head in full force when/if I go off it.

It’s not. I’ve been on meds that hide the PEM and you just crash harder later but on Abilify nope it actually makes it go away or greatly reduce and you don’t get payback like that.

 

[leokitten]

The only two medications for depression that have a low-history of causing sexual issues are Wellbutrin and Mirtazapine, neither of which is an SSRI or SNRI.

And moclobemide has a very low risk of causing sexual side effects. I also think it’s one of the lowest of all antidepressants

 

[Rvanson]

And moclobemide has a very low risk of causing sexual side effects. I also think it’s one of the lowest of all antidepressants

I was once on Moclobemide. I had to get it "elsewhere" as its not approved in the US. It was a great anti-depressant, but unfortunately also caused (increased) my insomnia. But definitely not like other MAO- inhibitors
which often do cause sexual dysfunction, along with insomnia. I felt a physical increase in endurance on that med.

 

[leokitten]

I was once on Moclobemide. I had to get it "elsewhere" as its not approved in the US. It was a great anti-depressant, but unfortunately also caused (increased) my insomnia. But definitely not like other MAO- inhibitors
which often do cause sexual dysfunction, along with insomnia. I felt a physical increase in endurance on that med.

Insomnia issues go away after a while, at least for me they did. Still get ME sleep disturbances which appear immune/mast cell related and moclobemide nor Abilify help with that, but med related insomnia issues go away after a while.

 

[Hip]

The only two medications for depression that have a low-history of causing sexual issues are Wellbutrin and Mirtazapine, neither of which is an SSRI or SNRI.

Have a look at table 1 of this paper. You can see that for SSRIs, the incidence of sexual dysfunction is 25%–73%, depending on the particular SSRI.

For the SNRI class of drugs, the incidence of sexual dysfunction is 58%–70%.

TCAs have a 30% incidence of sexual dysfunction. For MAOIs it is 40% incidence.


The sexual dysfunction figures for individual SSRI drugs are: fluoxetine (57.7%), sertaline (62.9%), fluvoxamine (62.3%), venlafaxine (67%), paroxetine (70.7%), and citalopram (72.7%).


Moclobemide, the MAOI antidepressant I take, had the lowest incidence of sexual dysfunction (3.9%). Unfortunately it can cause some male breast growth (gynecomastia).

 

[TinaYesen]

The sexual dysfunction figures for individual SSRI drugs are: fluoxetine (57.7%), sertaline (62.9%), fluvoxamine (62.3%), venlafaxine (67%), paroxetine (70.7%), and citalopram (72.7%).

[Abilify is] a combination of the SSRI antidepressant fluoxetine (Prozac) and another drug approved for bipolar disorder and schizophrenia called olanzapine (Zyprexa). (WebMD.com)

Thanks, Hip. So Abilify, which is fluoxetine + olanzapine is actually one of the least offenders for sexual dysfunction.

Do we know if the rate of sexual dysfunction increases based on the number of total SSRI's one is on?

There are a number of case reports of sexual side effects, such as priapism, painful ejaculation, penile anesthesia, loss of sensation in the vagina and nipples, persistent genital arousal and nonpuerperal lactation in women. (Quoted paper)

Additionally, do we know if vulvodynia is considered sexual dysfunction?

Since taking 30mg Lexapro (escitalopram) with Abilify I've noticed pain in my vulva. It definitely caught me by surprise and was a bit concerning as I'd never felt that before in my life.

I'm open to the fact the vulvodynia could however also just be part of my ME pain showing up in a different way.