Aripiprazole - Abilify

If you went up in dosage I would expect it to cause sleep difficulties again until it normalizes?

 

Yes, maybe, I am too impatient, I may do changes thing too fast, not allowing one change to work before I experiment with others.
But, with regard to take Abilify morning vs evening, one should think that when you take it in the morning, some have disappeared in the body during the day (although not much with a half-life of 80h, but maybe 10%), that meaning that the evening amount of Abilify is a little less, when one takes it in the morning. Then if I fall asleep well, when taking it in the morning, it is the same as a lesser evening dose. Anyway, I just have to try. (And not be too impatient)

 

Isn’t it true for most (if not close to all) FDA approved drugs, that during their successful phase III trials that were key to their regulatory approval, there was almost always a significant subset of patients for whom the treatment didn’t have good efficacy if at all, and this is actually very common?

It’s very common, even for illnesses with very sensitive and specific diagnostic criteria, that a significant enough subset of patients do not respond well to what is considered quite successful approved drugs.

For example, if you look at the multiple successful phase 3 trials for Abilify as an adjunctive to antidepressants for treatment resistant major depressive disorder, there’s a significant percentage of patients in the trial for whom it wasn’t efficacious. One could also find multiple examples of phase 3 trials for well-known successful non-psychotropic drugs showing the same thing (eg drugs for diabetes, heart failure, autoimmune disorders, etc).

Besides this point, it seems like the medical establishment is more than willing to state that the benefits of using Abilify as an antidepressant adjunct significantly outweigh the risks knowing full well that for a percentage of people it’s just not going to work.

Given this, I would totally expect any treatment for ME is only going work in a subset of patients in a clinical trial no matter what the treatment.

 

The sleep became worse, not having enough hours of sleep at 1,5mg. Enough hours of sleep is very essential to my well-being, so I had to lower the dose. I am now on 0,75mg/day, and I am sleeping enough hours again. And still having the same benefits.

@leokitten now you’ve been on Abilify more than 4 months and thus are in the risk of poop out, are you still having the same benefits? Are you still on 0,5mg/day?

I am 4 months on Abilify tomorrow. Having a good hope that the benefits will continue beyond that.

 

Still same benefits since leveling off, take a bit more like 0.6-0.65 mg/day since a long while. 4 1/2 months on treatment

 

@leokitten Since we have improvement on both KD and Abilify, may I ask if you have tried Plaquenil? And how you eventually responded to it?

 

I haven’t tried it. Did you and did you respond to it?

 

I haven’t tried it, but I want to. Abilify helps much for energy and pem, but not for the sore throat/coldness which is also quite debilitating for me. Need to dress very warmly even through summer, and two duvets, blabla. I had a hope that the Covid vaccine would help for that, but no.

That’s “good news” for me that Plaquenil haven’t “failed you”, at least not yet.

Others medication I remember seen you take, that I have also taken is LDN, that I tried six years ago. I had a temporary improvement on that also, and after a lot of trying I got response from the alternative dose-regime with 1,5mg morning and evening. The improvement faded away slowly after half a year, but there was some kind of syrup in head and body, that I had, that is gone forever it seems.

That’s what I heard of Plaquenil also, that it fixes things, and eventually it doesn’t matter if you take it or not after some months or seasons.

 

I think I wrote before here, but I used to have way more typical ME chronic immune activation/flu-like symptoms and also temperature regulation issues, like wild changes in temp, suddenly freezing cold nose, lower legs and feet, constantly going to the thermostat because felt like apartment temp dropped but seeing it was a perfectly normal or even warm temp, etc.

These symptoms very slowly significantly reduced or totally went away over the years of illness, along with a lot of other typical ME symptoms I lived with for years.

For a while now my only really significant and debilitating symptoms are what many consider to be the “core” ME: fatigue, PEM, neurological, cognitive, sleep.

Compared to years ago, my symptoms and illness feel very “central” and neurological now, like mostly coming from dysfunction or damage in the CNS more than anywhere else. Maybe that’s why Abilify seems to really help pwME like me and my symptoms?

 

Would be interesting to try plaquenil, thanks for mentioning it.

 

update for what it’s worth. usual caveats about anecdotes apply obv.

to recap, i am severe (almost entirely bedbound, entirely homebound) and took low-dose abilify for 4 months. initially, i noticed a small improvement in how much I could exert before PEM hit. for example, i held longer conversations with my caretaker and didn’t feel ill like I would’ve previously. however, by month 4, i felt unsure I was benefiting at all—the apparent benefit was small enough that I couldn’t distinguish between my having acclimated to it vs it disappearing. i stopped the med with the appearance of some worrying new heart palpitations.


my update: the heart palpitations are entirely gone. it took about a month off the med.


i noticed myself feeling unusually exhausted after I stopped, and that’s saying something given my baseline severity. I had the worrying thought that i might be worse off than before I got on the med. I don’t have a good answer to this despite having since gone back on it and that’s uncomfortable.


I noticed other negative changes off the med: i no longer had the energy for my daily journaling practice that i started while on it. I started texting with a therapist (not about depression or my illness) while on abilify and had to stop that too. I had less energy for texting with friends.

because I was feeling worse and because my doctor agreed to an at-home holter monitor should the palpitations reoccur, I opted to start again. It’s been about a month back on it, and once again I feel like I can do a bit more. I had the energy to start reading a singing method book. Journaling is starting to feel more doable again (though I haven’t started). I’m messaging a bit more with my friends.

Not sure what I’ll do going forward, but my life being a little less challenging right now is appreciated.

 

Thanks for the update, hope you keep improving @jonathan_h

 

I’m almost 7 months on low dose Abilify and now I would say I’m starting to feel some significant tolerance or reduction in efficacy. It’s still working well though tolerance has been a very slowly increasing phenomenon, which is different than what many others have experienced. I’m going to take a break from Abilify for 6 months or so, see what happens, and see if I can restart with similar effects.

 

I would say the main efficacy change, that at least in my illness strongly negatively affects the other ME symptoms, is related to sleep. After starting Abilify, my sleep immediately and suddenly went from bad ME disturbed and unrefreshing to pre-ME. I had totally forgotten how I used to sleep before ME since it’s been so many years and it was such a nice change.

I was getting sleepy at the right time, falling asleep really fast after getting tired, sleeping deeply, and waking up refreshed most days. This was with the help of sleep meds but I was using the same rotation of sleep meds pre-Abilify so nothing changed there.

That lasted consistently the first 3 months or so. Then I noticed that this started to change very slowly and become less consistent. So now at 7 months it’s become more or less back to pre-Abilify and while other ME symptoms still seem to be significantly improved by the drug, my sleep is bad again and that just ruins everything else no matter how much a drug is helping other symptoms.

 

@leokitten Just wanted to say I'm so sorry that the sleep improvements haven't lasted for you and very much hope you maintain the other improvements.

Also want to say that I have appreciated your openness is sharing your experiences. Several of my family members with ME, including me, are taking Low Dose Abilify, with mostly positive results so far. I'll post about this when we have a better idea of trajectories.

 

I suspected from the radio silence that things were starting to get less good. Once you've been off the Abilify for quite a while, do let us know how you're feeling "underneath".

 

Will do, but funnily I’m actually in the category of ME forum users that if I’m on the forums less means I generally have more energy and feel better and am busy trying to live some form of life, when I’m on the forums a lot usually because I’m bedridden 24/7 or something really exciting (to me) is happening in the ME community

 

I want to report that the last two nights and following two days my sleep again went back to pre-ME great and during the day I’ve suddenly felt as well as I’ve ever felt during Abilify. I’ve only been off the med for a couple days so it’s still pretty much near the plasma concentration my body was used to.

So I don’t know now if I should stop, I just had this increased downturn in sleep quality and then increase in ME symptoms the past few weeks so thought it was going to be the temp end of my current Abilify journey but then suddenly now I’m as good as ever?!?

Like others have reported when on Abilify, I’ve had these sudden positive increases in efficacy after thinking I was possibly becoming tolerant in the last months, so all I can say is I don’t know what is going on with how Abilify is interacting with my ME pathology and body.

I also thought that maybe being on the med and having as many good days as possible will push my body into the direction of remission or long-term improvement? Because on the good days my body feels pretty good like it’s not adding to any cumulative ME damage. I know just speculation but in the back of my mind a lot…

 

On the brilaroxazine front, good news from Reviva Pharmaceuticals, they raised $34.5 million from investors and will start phase III trial of brilaroxazine for schizophrenia in Q4 this year.

So if things continue to be successful the drug will be FDA approved and available in the US in 2025. They are also in earlier stages trialing for depression, pulmonary arterial hypertension (PAH), idiopathic pulmonary fibrosis (IPF), and possibly other indications. I think they will start phase II trials for PAH and IPF in the near future.

https://ir.revivapharma.com/news-re...als-holdings-inc-reports-second-quarter-2021/

For those who didn’t see the posts on brilaroxazine, it’s also known as oxaripiprazole as it has one important atom change in the small molecule, and this change gives it an even better binding profile than aripiprazole and really importantly it has shown so far in humans to have zero metabolic side effects in phase I and II trials. This would be a first for an antipsychotic drug.

It’s binding profile also seems to follow a similar functional selectivity and partial agonist activity as Abilify at low doses compared to higher doses. Trialing this drug for ME at least to me who help answer the question if the metabolic side effects of Abilify are the cause of tolerance/efficacy loss for some in ME.

 

This looks like good news @leokitten Please keep us updated!