Aripiprazole - Abilify

Aripiprazole also affects ion channel function.
Open channel block of Kv1.4 potassium channels by aripiprazole
Not sure how plausible it is that this could be the mechanism of action in ME, but there may be other ion channels affected as well.

 

Going on and off antipsychotics is not a good idea...

https://www.mind.org.uk/information...nts/antipsychotics/coming-off-antipsychotics/

I stopped taking Abilify after it stopped working and now have insomnia and hot at night feeling (like night sweats), which I didn’t have before.

I wonder what Ron Davis’ Abilify reformulation idea is. If it also results in tolerance and people going off and back on it repeatedly, it might also be a problem.

 

What was your dose @Jaybee00? And did you take it long before it stopped working?

 

Around 2mg. About 4 months.

 

I’m just happy to take what I can get for now. Being bedridden is hell I desperately needed a break from it.

 

@Jaybee00; thanks.
I am sorry that you experienced permanent worsening on sleep. Hopefully, I don’t have to go up to 2mg and hopefully maybe not get tolerance, and sleep worsening.

 

I am trying to figure out and stay at the lowest dose that works in order to minimize chance of potential side effects and to not get any possible “fake” energy effects the higher you go. Though I think this is also individual specific as I read others feeling stimulated at 0.5 mg and I don’t feel that way at all I just feel better.

And “works” is a subjective and nebulous word in this context. Abilify takes 2 weeks to reach steady state at a specific dose. Though I’ve read in multiple testimonials that even staying at the same dose beyond 2 weeks that people have continued to experience improvements afterwards.

For myself I feel trial and error are only way to figure what the sweet spot dosage is. It looks like everyone is different based on user reports. For now I’m staying at 0.5 mg for a few weeks.

 

I would also put a caveat on anything found in research papers or on the web regarding antipsychotics, the issues generally described are for people taking 20x the dosage we are taking.

Based on the anecdotal reports so far, almost all the pwME who trialed Abilify have not experienced any significant issues when the drug stopped working and they went off it, they simply slowly went back to their pre-Abilify state.

 

Another reason I wanted to trial Abilify is because one of the few ways currently to get a clue about what subset I am, what pathophysiology I might have, is to trial treatments to see what works. I know it’s not foolproof in any way but there aren’t many other ways to find out what’s going on in my body.

Now I know I’m part of the Abilify responder subset, I wouldn’t have known that without trying it. This knowledge might help me in future.

 

I understand, there's also the potential benefits of taking a 4 month break from the illness. It can give people a chance to get to the store, move if they have been putting it off, but also condition a little bit, get the blood flowing.

Were you able to find if people who developed tolerance to it years ago are able to take it, say, once a year or once every 2 years?

Not a believer in Jay Goldstein and not a recommendation, but he always wrote in his books inosital 1g could prevent or undue me drug tolerance. If you search his books for keyword inositol you might find more info.

 

My own low-dose abilify anecdote for what it’s worth:

Given the relative safety of this fad treatment and the fact severe patients reported benefiting, I (also severe) thought I’d give it a shot.

I’ve been taking it for a week and a half now, and I’m able to do a little more without triggering the storm of flu-like symptoms, feverishness, underarm sweating, and just feeling generally rotten that’s always ready to be kicked up from minor exertion. It feels as if the storm going on in my body has calmed down a bit. I just had a 20 minute conversation with my mom (the longest we’ve had in months/maybe years), and by the end I hadn’t sweat through my shirt or experienced all the aforementioned symptoms like I normally would. These last few days, I’ve been able to do a little advocacy work for the first time in a couple months. Yesterday, I was able to sit up long enough in my wheelchair to help out a bit in the kitchen for the first time in a few months.

I’d like to think I’m sensitive to the limitations of anecdotes like this, so I don’t expect anyone to update their priors based on what I’ve said and am about to say, but I’m confident the cause of this improvement is the abilify. I’m not taking any other new med or supplement. The way my PEM has changed for the better is very unusual for me.

It’s also early—maybe this apparent benefit will end up being transient.

 

I found an Abilify testimonial thread on PR dating back to 2012, and one member posted on the thread with her testimonial in 2017 where she experienced the same tolerance after ~4 months that people have been reporting more recently.

She described that she was able to cycle after developing tolerance by taking a break for 4-5 months and Abilify would work again for another ~4 months, and so on.

https://forums.phoenixrising.me/threads/abilify-and-energy.20815/#post-832373

 

Glad you are feeling a bit better @jonathan_h, at least to have a respite. Reading your description I feel it’s very much like the changes I’ve been having, as if the illness calmed down significantly across the board (even though it’s still very much there).

I sincerely think there is something important about low dose Abilify and ME that needs to be researched, at least for a subset of pwME. It might not be a long-term treatment, but I think our self-experimentation can give much needed clues and ideas to ME researchers and clinicians that could lead to discoveries and better treatments.

 

I can see that, yes it's interesting how it is similarish to what some are finding as they trial the drug now. It's too bad neither continued to post as they might have been able to provide a long-term experience to reflect on abilify.

 

Regarding doses, I think it’s worth pointing out that in the study, the mean dose was 1,1mg.
That means there were several that benefitted from Abilify that had their dose less than 1mg.

 

Abilify as I read have half-life 75h, or even more. That means that we eliminate ca. 20% of the amount in the body per day. And that also means that the effective dose is really five times the daily dose (by adding all the former dose rests), in mathematical theory
What do you mean above? That it isn’t so? Or something else?

 

@Jessie 107 @chelby Hope you're both doing okay! We've not heard from you in a little while. How are your Abilify trials going?

 

Probably not a good idea to go on and off antipsychotics repeatedly like this—may lead to long term problems with withdrawal and kindling.

https://en.m.wikipedia.org/wiki/Kindling_(sedative–hypnotic_withdrawal)

 

About the summing up from former doses, I should have written it above.
Given 20% disappear every day, that means one has 0,8 times the daily dose from yesterday, from the day before yesterday, one has 0,8*0,8 times the daily dose, from three days ago, the rest is 0,8*0,8*0,8 times the daily dose, and so forth. It becomes a row, and summed up to infinity it gives five times the daily dose.
This is of course theory, and maybe not what happens in real bodies.

@Jaybee00 I agree that going on and off many times may not be good idea. Even at smaller doses.

 

My definition of "stimulating" includes something which encourages/tempts you to be more physically active, BTW.

She's taking it twice a week because it's "easier". If it really does last in the body for 75 hours or whatever it is, that must surely mean that she's effectively bobbing around on the bottom, partly "on" it and partly "off". That doesn't sound like a particularly good idea to me, although of course I'm no expert.