Aripiprazole - Abilify

leokitten said:
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.
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I think tweaking the dose could eventually do good. In one direction or another. I do that now. I also have had less effect the last months. I thought that it may have come from vaccine side effects because it started the day after the vaccine, but seven weeks after, it became good again. And then bad, and now it it half good/half bad. I try to go both up and down on the Abilify dose. Right now it seems that the dose somewhere between 0,5 and 0,75 is best. But it may be that it isn’t so forever.
 
So far since Sept 4 when I had the last report and blip I’ve really bounced back to how I was on Abilify before. Lowered Abilify dosage to 0.25 mg / day and still doing relatively great with only infrequent downturns that last a day or two and driven by worsening sleep disturbances but have these again infrequently. So no idea but efficacy seems to have gone up again or maybe the idea of having taken it for months and the changes it has caused have become semi-permanent even at a lower dose?
 
leokitten said:
So far since Sept 4 when I had the last report and blip I’ve really bounced back to how I was on Abilify before. Lowered Abilify dosage to 0.25 mg / day and still doing relatively great with only infrequent downturns that last a day or two and driven by worsening sleep disturbances but have these again infrequently. So no idea but efficacy seems to have gone up again or maybe the idea of having taken it for months and the changes it has caused have become semi-permanent even at a lower dose?
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That is very interesting, thanks for the update!
I seem to have the same effect as you on many things. I did try 0,25mg/day, but not for long, and as with you it is the sleep that makes the trouble. I may try again and be a little more persistent that I was. Now I take 0,5-0,6 mg/day, and I am not where I was four months ago, much less effect now that in the first months on Abilify.
And btw I had the second shot of Pfizer and there was no side effect this time, perhaps a little upturn that lasted some days.
 
That is a really sad story and I think demonstrates the importance of doing really well regulated clinical trials before prescribing to hundreds of patients as the Stanford clinic seem to be doing. And that includes ensuring they follow up all the patients and record all deterioration and report it honestly.
 
An update from me. I've been on Abilify 0.2mg/day five months now, and I'm still (much) better than I was prior to starting the med.

To qualify this: since starting Abilify, I can have PEM-free short conversations with family, write the occasional short email or forum post and watch for example a football (soccer) game or TV show. In past years I couldn't do any of those things on any given day without wiping out and suffering multi-day PEM.

Perhaps the biggest revelation for me is that I'm finding myself picking up learning Mandarin again - a hobby that ME forced me to ditch 5-6 years ago as I could no longer read a handful of lines without my brain fogging over and pooping out (resulting in PEM). Abilify gives me a little more cognitive stamina.

Mind you, I'm still 98% bedbound. Everything I do, I do lying flat on my back. I still get PEM if I'm (forced to) exceed my limits; all the usual triggers are still triggers. Physically things are also hopeless as ever; I can't stay upright for very long without brain fog, nausea, going pale as a ghost etc, and physical exertion wrecks me. But I know better than to push those limits.

Obviously we're all different, but to me Abilify has been a game-changer after 11 years of MECFS. Broadly speaking, I think it's hugely important to continue to respect the limits of - as much as I dislike the term - one's "energy envelope" while on Abilify, which is naturally difficult, because feeling better makes one want to do more.

Long story short, Abilify has helped me recoup a few % of the function I lost. Now that I've passed the 5-month mark I'm less wary of the drug losing its efficacy, but with this illness you never know.
 
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I really hope that they are doing more research into this drug. It really does seem to help many people, sometimes even significantly, but most report that the effect wears off. (It’s great that there are some people for whom this is not the case.)

Of course we would all prefer a full cure. But if they were only able to solve the tachyphylaxis issue I think I could have a somewhat bearable life on Abilify, compared to how miserable I am now.

Like JG says above, I would still be mostly bedbound, but I would have infinitely more energy to participate in activities, hobbies, etc from bed.


Are any groups still researching this? If not, why not?
 
Yap, low-dose aripiprazole is not a silver bullet. And while I'm reluctant to place agency with a drug's end-user, I do think it's important to use Abilify the right way. Which is to say: If I look back at my increasingly desperate self from 5+ years ago who tried to juggle an advancing illness with a crumbling career and personal life due to that illness, had Abilify been prescribed to me then, the med's initial "boost" would have undoubtedly petered out in face of the continual push-crash cycle I was in that saw me deteriorate further and further. When I read the social media reports on Abilify, I can't help but wonder if those patients are making the mistake I would have made.

When I did start Abilify in mid-2021, my situation was as stable as it reasonably could be considering the circumstances of my ME, and I moreover expected nothing of the drug though naturally hoped for the best - a mindset I've adopted towards all ME prescriptions and supplements. Lots of research remains to be done, as everyone is pointing out: We don't understand why low-dose Abilify works for ME, for what apparent subset of ME patients it works, and why it may cease to be effective. I also think that, if Abilify indeed sustainably helps a good chunk of patients, it can be used as a de facto subgroup-defining tool. Targeted studies of responder versus non-responser subsets based on the Stanford cohort would for instance be interesting.

I also think that the OMF are bearing Whitney's Abilify experience firmly in mind as a window into what's happening in MECFS, and their efforts may in fact be the quickest path to elucidating the pathology of the responder subgroup.

Nothing else I've tried over the years has truly helped by the way, pharmaceuticals or otherwise.
 
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“Upon going off of it, however, I found that all my symptoms actually got worse—worse, that is, than they were before I went on the medication to begin with.”

The worsening may likely be due withdrawal effects resulting from withdrawing from a psychotropic drug and might not be a worsening of underlying MECFS. Withdrawal symptoms can last for months.

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

https://www.frontiersin.org/articles/10.3389/fpsyt.2020.569912/full

https://www.ucl.ac.uk/news/2021/mar/coming-antipsychotics-may-take-years-first-paper-how-withdraw

https://academic.oup.com/schizophreniabulletin/article/47/4/1116/6178746
 
Jaybee00 said:
“Upon going off of it, however, I found that all my symptoms actually got worse—worse, that is, than they were before I went on the medication to begin with.”

The worsening may likely be due withdrawal effects resulting from withdrawing from a psychotropic drug and might not be a worsening of underlying MECFS. Withdrawal symptoms can last for months.
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that sounds significant.

are any of these things being studied in pwme?

- proportion of pwme who get worse
- length of time the worsening lasts in pwme
- anything else [severity, coadministration, disease course, did subjects /use/ newfound ability] that seems related to the worsening
- dose-response, dose-useful-time, dose-worsening charts
 
I stopped Abilify in October, even though it was still working though not nearly as well as the first few months on it, with the hope of cycling back on it next year and getting the same effects. I didn’t experience withdrawal effects and it didn’t get worse but I have gone back to moderate sometimes severe bedridden state I was at before.

I would say at least drug has brought about a lot of interesting new questions and ideas about the underlying nature of ME symptoms, because it’s hard to doubt that these effects albeit temporary are not real across so many people and variations of ME. Like people with ME who couldn’t talk at all who can suddenly talk.
 
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leokitten said:
I would say at least drug has brought about a lot of interesting new questions and ideas about the underlying nature of ME symptoms, because it’s hard to doubt that these effects albeit temporary are not real across so many people and variations of ME. Like people with ME who couldn’t talk at all who can suddenly talk.
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It's interesting. The medical memoir "Awakenings" on encephalitis lethargica by Dr. Sacks has been on my mind. Sacks treated survivors of the 1920s "sleeping sickness" epidemic many decades later, in the 1960s, with then newly discovered drug l-DOPA. Some patients proved responsive to an extent, for a time... In ME we have another post-infectious condition that responds to a dopaminergic drug; makes one wonder what Abilify might have done for those patients, hmm?

In any case, sucks that Abilify stopped working for you @leokitten. I'm bracing for the worst and hoping for the best.
 
J.G said:
In any case, sucks that Abilify stopped working for you @leokitten. I'm bracing for the worst and hoping for the best.
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For me the decline in Abilify ME symptom improvements was a slowly building thing over months. I think my experience was different than what some others have reported where it went from working great to suddenly not working at all within a few days or a week. Hindsight being 20/20 and that I've reverted to the severity was before starting Abilify, I can say it was still working and giving significant improvements when I stopped but just not nearly the level it was at during those magical first three months or so.

My theory is that it has to do with the metabolic side effects of Abilify (and every other antipsych currently on the market) interfering negatively with already existing ME cellular metabolic dysregulation or that its dopaminergic and serotonergic positive effects are eventually overwhelmed by ME pathology negatively effecting these neurotransmitter systems (and driving many core ME symptoms that Abilify initially makes go away).

Won't be able to even test this theory with an n=1 experience until brilaroxazine is FDA approved and available to us, since it will be the first antipsych working in a similar way as Abilify but without any of the metabolic or endocrine side effects.
 
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I will definitely try Abilify again in April with the hope it will work again in the astounding way it did for a few months. That would be wonderful if I could cycle like this over and over again even to get 4-5 months of feeling so much better and being able to do more during this time every year.

Some have reported cycling works for those where efficacy eventually wanes, but for others Abilify doesn’t seem to work again, like their ME adjusts.
 
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Is there any long term issues taking 2.5mg of abilify. I feel it's made my sleep more restorative, and rather than being stuck thinking about doing something I can just do it. Wondering if the benefits are worth the possible long term side effects.
 
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