Aripiprazole - Abilify

[leokitten]

Salut
u have not withdrawal s effets ? Im at 0,45, i increased very slowly (0,05 each 2 weeks) since may. It s not working as well when i was at 0,25 mg... i had two months with 1500-2000 steps. I was at 1000 in september. Now im in crash (a left side sgb, bad idea), bedridden, i m increasing LDA. I think 0,05 each week. I want to test a normal (1 mg). What do u think of my strategy ? U are severe ?

I’m not sure if you are crashing and bedridden a lot while on LDA if it’s going to work for you. I’m housebound moderate normally not severe

 

[neophyte32]

I’m not sure if you are crashing and bedridden a lot while on LDA if it’s going to work for you. I’m housebound moderate normally not severe

Thanks for your answer
So u are moderate and mild with LDA.
A lot of severe patient are taking LDA, with success.
I m at 0,50 mg, i think i m gonna stop next week if i have no improvment.
I am afraid off withdrawal s effects so i will decrease to 0,35 for on week then 0,20 and stop.
It was a very good experience, 3 months with 1500-2000 steps and better screen s tolerance. Maybe it will work again next year.

 

[Arfmeister]

This is a overview I once made based on 4 sources -( so excluding the Facebook ones):

TOTAL
	Phoenix Rising-poll	**X-poll**	Martha Eckey - TREATME Survey 2023	Anecdotes	TOTAL
	3			1	4
	7			4	11
	4	54	73	9	140
	2				2	53%
	6	30	30	4	70	23%
	6	30	33	2	71	24%
					298

 

[Trish]

Moderator note
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[DHagen]

This is a overview I once made based on 4 sources -( so excluding the Facebook ones):

TOTAL
	Phoenix Rising-poll	**X-poll**	Martha Eckey - TREATME Survey 2023	Anecdotes	TOTAL
	3			1	4
	7			4	11
	4	54	73	9	140
	2				2	53%
	6	30	30	4	70	23%
	6	30	33	2	71	24%
					298

Thank you for sharing this. Would you be willing to clarify how this is organized?

 

[Arfmeister]

Thank you for sharing this. Would you be willing to clarify how this is organized?

Disclaimer:
As you mentioned these online polls are often simple questions and differ in their set-up.
- but poor data is always better than no data.
- especially if you want to make a decision on trying LDA

Sources:
- The TREATME Survey 2023 by Martha Eckey is actually quite detailed (50% ME CFS / 50% Long Covid)
- X-poll done in 2024
- Phoenix rising 2021
- Anecdotes (from online accounts and sometimes patients I know)

Legend Explanation:

= Major response ( > 50% improvement)
= Good response (> 10%)
Small-Medium (1-10%)*
= same / nothing happened
= worse / adverse events

(* note there’s one change I wanted to make as there 2 ’s - but I cannot make any changes in the table anymore)

 

[Rick Sanchez]

After being off Abilify for some time now I do worry that for some patients it ´´masks`` cognitive PEM symptoms and thus leads to patients overexerting themselves.

 

[DHagen]

After being off Abilify for some time now I do worry that for some patients it ´´masks`` cognitive PEM symptoms and thus leads to patients overexerting themselves.

Is this to say that you feel you can now recognize PEM that you were experiencing whilst on LDA and which you did not recognize as such at the time?

 

[Rick Sanchez]

Is this to say that you feel you can now recognize PEM that you were experiencing whilst on LDA and which you did not recognize as such at the time?

Think the effect when I took LDA was so gradual I basically hadn`t really noticed until I stopped taking it. My PEM with LDA was much better. Only really noticed last week after I was social with my best friend where I could not stop talking. Had my usual brutal hangover flu PEM afterwards, which I still feel the effects of as of writing this.

The thing is though I am not sure that the less severe PEM is a good thing. I think I was constantly overexerting myself during LDA which might have caused my tinnitus to worsen. At first I thought the tinnitus was just worse due to catching a bug, but now with hindsight I think I was often slightly overexerting myself because there was barely any PEM to stop me when I slightly overdid it.

Sadly, there are so many variables with MECFS, especially my kind which fluctuates a lot, so who is to say. The only thing I can say for certain is that my fitbit data looks no different from before, during and after LDA.

 

[leokitten]

Think the effect when I took LDA was so gradual I basically hadn`t really noticed until I stopped taking it. My PEM with LDA was much better. Only really noticed last week after I was social with my best friend where I could not stop talking. Had my usual brutal hangover flu PEM afterwards, which I still feel the effects of as of writing this.

The thing is though I am not sure that the less severe PEM is a good thing. I think I was constantly overexerting myself during LDA which might have caused my tinnitus to worsen. At first I thought the tinnitus was just worse due to catching a bug, but now with hindsight I think I was often slightly overexerting myself because there was barely any PEM to stop me when I slightly overdid it.

Sadly, there are so many variables with MECFS, especially my kind which fluctuates a lot, so who is to say. The only thing I can say for certain is that my fitbit data looks no different from before, during and after LDA.

I would say everyone is different, and the fact that your ME normally fluctuates a lot means it's very difficult to reliably attribute symptom changes or new symptoms to LDA use. My baseline ME doesn't fluctuate that much. I've cycled LDA since the beginning of 2021, so quite a number of times, and I've never noticed any kind of baseline worsening when off LDA. In fact, I do believe the time I've spent on LDA has actually helped my body and helped slow down long-term gradual worsening of my baseline.

At least for me, my regular baseline ME state feels like it's constantly hurting my body and brain, that this chronic state has long term gradual damaging effects on me as I age, basically accelerating my aging. When on LDA I seriously feel like that constant damaging feeling is on pause and my body and brain feel much, much happier physically. It just sucks that it doesn't work for longer and I have to cycle it.

 

[Arfmeister]

This is a overview I once made based on 4 sources -( so excluding the Facebook ones):

I’ve have now completed an overview with more patient experiences and online data (n=538)
This overview table includes 101 patient experiences and 437 ME/LC responders from online surveys (n=538)

• 55% clear/partial benefit =
• 23% no benefit =
• 23% harm/lowered baseline OR early stop because of side effects =

Fromm the 55% responders (n=293)

• estimation: 30 to 60% experiences a poop out (but can get back to old baseline) ⇒
• estimation: 30 to 60% experiences continuous positive improvement
• estimation: 1~2 % Super-responders

Here’s a previous thread I made which includes side effects, benefits, type of responses, cautions, etcetera

 

[Trish]

Interesting.

Is there some risk that some individuals are being counted more than once, as anecdotes, and taking part ìn multiple surveys?

Is there information on how long they have been on the medication, and the magnitude and duration of change in symptoms that they report?

It's high time the doctors prescribing this set up a proper clinical trial.

 

[Yann04]

1-2% “superresponders” sounds about on par with general chance of random recovery and attribution to the drug?

 

[Arfmeister]

Is there some risk that some individuals are being counted more than once, as anecdotes, and taking part ìn multiple surveys?

Yes, I presume there will be some double counting. And bias. Maybe more responses from more outspoken responders. Etc.
Factor that in.
This is like Stone Age caveman data collection

 

[Arfmeister]

1-2% “superresponders” sounds about on par with general chance of random recovery and attribution to the drug?

Some of the patient anecdotes are legit in my opinion - instead of incidental / random.
I’ve had some online contact with a few.
If possible, I try to filter the anecdote for legitimacy because the data needs to have as much value as possible for myself

 

[Jonathan Edwards]

What constitutes 'legitimate'? Even in carefully controlled trials we have no idea whether the drug caused an improvement or worsening in an individual unless we have some objective pharmacodynamic data.

 

[Arfmeister]

What constitutes 'legitimate'? Even in carefully controlled trials we have no idea whether the drug caused an improvement or worsening in an individual unless we have some objective pharmacodynamic data.

As in patient anecdotes/experience that are legitimate for me

Without getting into so much detail, that I will crash my brain today (which is not worth it)
- I verify patient anecdotes - if possible - with +10 questions via direct message
- to understand specifics of Patient and scale + sustainability improvement
(I dó mainly chase and verify improvements)

The reality is that we have a ‘poor man disease’, with lack of data and medical experience (beggars can’t be data-choosers)
- so to understand the reality and treatment potential better - I try to collect a lot of anecdotes to understand various treatments better

Anyway I share, because I think it might come in useful for some
- Critical thinking is expected (on S4ME)