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Aripiprazole - Abilify
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Yann04
Senior Member (Voting Rights)
Yeah I’ve seen that group but I’m really skeptical of trying a drug that has a large number of people saying the drug made them worse over a long period. So I’m waiting for a properly controlled study until I consider.
Binkie4
Senior Member (Voting Rights)
I wanted to record that for the last 6 weeks I have been on a very low dose of aripiprazole. I started very low at .1 increasing by .1 a week so I am now on .6. I need to stop for other reasons but hope to restart after a short break. This is an extremely low dose so it may be unrealistic to expect any effects.
There have been no negative side effects except possibly a transient headache and maybe worsening sleep. Positive effects are also difficult to estimate. The one I consider definite is a relief from the fatigue/ hangover feeling on waking in the morning. This was a severe symptom with me, awful every day, I couldn't move until lunchtime but now, I wake about 9 ish and immediately go downstairs in my dressing gown. I don't attempt to go out but on the day I had a medical appointment in the morning, it was easier to manage. I have tried staying in bed for extra rest but I really can't.
Can I do more of other things? It is impossible to tell. I have had one severe crash which lost me the followIng several days after exceeding my energy envelope, otherwise I have led my very quiet life. Brain fog is still there. But then I am still on a very low dose. Will update when I can.
I am hoping I can use the break to help me 1. clarify whether my sleep improves as the aripiprazole leaves my system, and 2. whether I can wake up and move downstairs straightaway or whether the dreadful morning fatigue returns.
edit: I'm not part of a trial
edit2: on reading back through posts, there are other people for whom arip caused improvement in sleep at first but it didn't last which is my experience currently
There have been no negative side effects except possibly a transient headache and maybe worsening sleep. Positive effects are also difficult to estimate. The one I consider definite is a relief from the fatigue/ hangover feeling on waking in the morning. This was a severe symptom with me, awful every day, I couldn't move until lunchtime but now, I wake about 9 ish and immediately go downstairs in my dressing gown. I don't attempt to go out but on the day I had a medical appointment in the morning, it was easier to manage. I have tried staying in bed for extra rest but I really can't.
Can I do more of other things? It is impossible to tell. I have had one severe crash which lost me the followIng several days after exceeding my energy envelope, otherwise I have led my very quiet life. Brain fog is still there. But then I am still on a very low dose. Will update when I can.
I am hoping I can use the break to help me 1. clarify whether my sleep improves as the aripiprazole leaves my system, and 2. whether I can wake up and move downstairs straightaway or whether the dreadful morning fatigue returns.
edit: I'm not part of a trial
edit2: on reading back through posts, there are other people for whom arip caused improvement in sleep at first but it didn't last which is my experience currently
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Commenting on this post from another thread, I have not seen any evidence from any properly conducted controlled clinical trial for Abilify being better than a placebo effect.
I agree we have seen some anecdotes on social media, including on this forum, from people who describe significant improvement while taking abilify, at least for the short term, though many seem to relapse after a few weeks or months.
@Jaybee00, can you provide evidence for 'many thousands' benefiting, and for how long their improvement lasted? And, importantly, any evidence for the relative proportion who tried it and did not benefit, had side effects, were worse than before when they relapsed etc.
I don't think it's helpful to make sweeping statements of thousands benefiting from any treatment based solely on anecdotes and poorly conducted clinic reports such as this one:
Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021
Does anyone know of any clinical trial planned or under way?
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leokitten
Senior Member (Voting Rights)
For almost every FDA approved drug one can find a big enough group of people saying the drug made them worse. Take GLP-1 drugs for example, which have been prescribed for over 10 years now, they are some of the most efficacious and safe drugs ever created yet still even after countless large and very successful gold standard studies there are many people who are made worse by these drugs! Like serious things eg blindness, gastroparesis, other GI issues, etc.
FDA approved treatments targeting immune system and neurological related illnesses generally have lower efficacy and there are even more patients that can end up worse off due to various factors, such as high intrinsic variability present in the immune system and brain and our very limited understanding of these systems and disease pathology. You are never going to find a treatment level of evidence to assuage you.
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Yann04
Senior Member (Voting Rights)
We’re talking about 50% of people on the apiprazole facebook group saying the had a short term improvement which eventually led to long term worsening. This isn’t a small proportion.
leokitten
Senior Member (Voting Rights)
To me and many others it’s the $64m question. I’ve continued to get similar incredible benefits from LDA but it requires a many months long break in between after it poops out until it starts working really well again.
I did another cycle this year for 7 months. I went on a long vacation with a plane trip, I did volunteer work, I had family and friends visit the house, I was gardening again. It was incredible.
For me it works best and reduces or eliminates the most debilitating ME symptoms the first couple months. But the slow road of pooping out starts pretty early on and progresses slowly over the months I take it. Symptoms slowly creep back. For me it never fully poops out even after 6-7 months taking but I get to the point where it’s not making that much difference anymore and I stop the cycle.
After two weeks or so of coming off of it I fully return to my baseline which is housebound and mostly in bed throughout the day. That’s how much of a difference it makes. I’m currently now writing this from bed waiting until next April-May when I start another cycle and get some of my life back.
There are other people like me, the problem is that there’s a selection bias for negative anecdotes from people for whom it didn’t work or made them worse because they are still sick and posting on ME forums, whereas those who’ve improved a lot and gotten some life back spend less or even zero time on ME forums because they are better.
leokitten
Senior Member (Voting Rights)
And for some reason they are able to definitively show causation that the cause was taking LDA and not just getting worse because ME will do that and taking LDA was just bad timing making the correlation look like causation? The FBK LDA group tends to be quite ill-informed on a lot of things.
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For those who are benefiting from this drug and seems to lose effect after a while. How long break is needed? I felt good for 2-3 months when I started abilify. Gradually lost the effect (if there is any). Been two months without it. Feel like cr** now. Is it too soon to start using it and titrating up again?
Probably several months, maybe ~4-6 @leokitten has more experience. After it pooped out for me I didn’t try again.
I would definitely try to keep the dose at the absolute lowest level that gives an effect.
I would definitely try to keep the dose at the absolute lowest level that gives an effect.
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leokitten
Senior Member (Voting Rights)
I’m in a similar boat as you. LDA will work incredibly well for me at first but slowly lose effectiveness and ME symptoms increase again over the course of many months. I usually take it for 6 months at a time and been taking 6 month breaks until I can cycle back on it. If you only took it for 2-3 months maybe a 4 month break would be enough? Honestly you just have to try to see how you respond.
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Binkie4
Senior Member (Voting Rights)
I have still not restarted arip for specific reasons not related to it and probably won't for a while.
I wanted to report on the persistence of earlier waking. I am waking between 9 and 10 (sometimes later if I have not gone to sleep till 6am) but the big change is that I have continued to get up immediately on waking and go downstairs in my dressing gown which I have not done for years. There has been no recurrence of the hangover type symptoms that used to occur every day and made mornings so unproductive. I still rarely go out in the mornings but as least I don't feel so ill.
After a trial with the new medication, I have returned to 5 mg of a benzo to aid sleep. My sleep is awful and is regularly sleep reversed. Sleep wasn't improved by arip, maybe worsened.
I am curious to know what will happen if I restart arip but a bit nervous that I might lose the morning benefit.
I wanted to report on the persistence of earlier waking. I am waking between 9 and 10 (sometimes later if I have not gone to sleep till 6am) but the big change is that I have continued to get up immediately on waking and go downstairs in my dressing gown which I have not done for years. There has been no recurrence of the hangover type symptoms that used to occur every day and made mornings so unproductive. I still rarely go out in the mornings but as least I don't feel so ill.
After a trial with the new medication, I have returned to 5 mg of a benzo to aid sleep. My sleep is awful and is regularly sleep reversed. Sleep wasn't improved by arip, maybe worsened.
I am curious to know what will happen if I restart arip but a bit nervous that I might lose the morning benefit.
rapidboson
Senior Member (Voting Rights)
Is there any new info on how/why this is supposed to work? And why it poops out on a group of patients that seemingly had gotten better?
And any knowledge on how to optimize effect and length of effect/avoid poopout?
And any knowledge on how to optimize effect and length of effect/avoid poopout?
Yann04
Senior Member (Voting Rights)
Lots of anecdotes. No serious research yet.
It really frustrates me because it seems actually worth doing a small RCT on given how much people say it helped. But instead we’re funding trials into Yoga and Supplements.
benji
Senior Member (Voting Rights)
I was in this thread a long time ago, 4 years I think. I had good effect that time, but that faded away after half a year. 2 years later, ie 2 years ago i tried it again and was good again for some months. I am severe/moderate baseline, but with abilify moderate/mild. Now I have to find a doctor to give it, since my GP quit. The last year Apigenin has helped me, but seems that that effect is pooping out too, now.