leokitten
Senior Member (Voting Rights)
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
Aripiprazole - Abilify
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neophyte32
Established Member (Voting Rights)
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
Established Member (Voting Rights)
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 |
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Thank you for sharing this. Would you be willing to clarify how this is organized?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
Arfmeister
Established Member (Voting Rights)
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
Senior Member (Voting Rights)
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.
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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
Senior Member (Voting Rights)
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.
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leokitten
Senior Member (Voting Rights)
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.
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