Aripiprazole - Abilify

leokitten said:
So I think the same goes with Abilify. I think it can help a great deal with whatever ME neurological and neuroinflammatory pathology is going on and your brain will wake up from the ME pain and haze, but like keto there are crucial aspects of ME it doesn’t help with and you have to consciously fight yourself to keep from overdoing even though you aren’t getting any signals.
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Well, that's been my concern recently, too, which is why I suggested checking your baseline, so to speak, once you come off the trial so you can see what you're really like underneath it all. Anyway, I was told that the purpose of aripiprazole, in the context in which I've encountered it, was to augment the effect of another antidepressant, rather than do anything individually, so that may partly be why reactions are so varied, depending on what else people are taking.
 
Abilify is still working for me I am taking 3 mg.
I am 100-percent bed-bound so yesterday I was able to have a bath using a bath lift had my hair washed .
I was also able to go downstairs using a stairlift ,and I was down there 3 hours.
In the evening I was able to watch TV for more than an hour ,none of this would be possible before abilify.

The other thing I've noticed since taking 3 mg is my heart rate is lower at first I thought it was just a fluke but it remained stable and lower than my usual heart rate.

I have also just started taking LDN I'm only on one milligram at the moment I also take an occasional celebrex although I've only just started this.

I will keep you updated.
 
I lurk about on Instagram, and I've been following a sweet German chap, a young lawyer called Martin. He's an OMF Community Ambassador. You can find him under the name paused_me.

It's a cautionary Abilify tale.

He had severe ME. 95% bedbound for nearly 3 years, with a J tube, very light sensitive and noise sensitive. He started taking Abilify, with LDN and Celebrex.

He had an incredible recovery to moderate ME. His Instagram of the last four and a half months shows his progression from extremely ill in bed to out and about in the sunshine, working part time as a lawyer from home, cooking and eating with friends and family, making music, even driving short distances.

He was so joyful. It was beautiful to see.

But it came to a sudden halt with a huge crash. He posted today that he thinks Abilify has stopped working. It brought to mind what @leokitten wrote about not being able to tell when you're over doing it...

Not getting the usual messages that tell us to stop. PEM is useful! It prevents bigger and longer crashes!

I am so sad for him. I hope that a few months of serious rest will allow his body to utilise Abilify again.
 
Squeezy said:
I lurk about on Instagram, and I've been following a sweet German chap, a young lawyer called Martin. He's an OMF Community Ambassador. You can find him under the name paused_me.

It's a cautionary Abilify tale.

He had severe ME. 95% bedbound for nearly 3 years, with a J tube, very light sensitive and noise sensitive. He started taking Abilify, with LDN and Celebrex.

He had an incredible recovery to moderate ME. His Instagram of the last four and a half months shows his progression from extremely ill in bed to out and about in the sunshine, working part time as a lawyer from home, cooking and eating with friends and family, making music, even driving short distances.

He was so joyful. It was beautiful to see.

But it came to a sudden halt with a huge crash. He posted today that he thinks Abilify has stopped working. It brought to mind what @leokitten wrote about not being able to tell when you're over doing it...

Not getting the usual messages that tell us to stop. PEM is useful! It prevents bigger and longer crashes!

I am so sad for him. I hope that a few months of serious rest will allow his body to utilise Abilify again.
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This isn’t the entire story. I watched every video and read every post on Martin’s Instagram feed that was ME related.

He was overexerting and crashing multiple times during his short Abilify treatment these last three months or so. He started working again full time (telework) and really ramped up his stimulation and physical and mental exertion even though he was still moderate severity and has major muscle atrophy.

Regarding my story with keto, I wasn’t severe when I started but mostly housebound moderate and still could occasionally go out and do sedentary work with long breaks.

It improved my condition a lot though I didn’t go back to work full-time and mostly continued to do sedentary telework part-time. I increased other activities like getting out of the house more to walk and do groceries etc. Even that was too much and the exertion capacity improvements from keto weren’t enough to handle it.

But for a lot of other people keto has helped long term, and I believe it helped because they aren’t in any rush to increase their exertion.
 
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Jaybee00 said:
For me I don't think it's a question of overdoing it, but rather that it just stopped working.
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I believe since you started Abilify you also ramped up your exertion, you said you are working 50% again amongst other things.

There are multiple people who have been taking Abilify where it hasn’t faded, at least a few on PR. Martin said he also knows someone who has been taking it well over a year or more and it’s still working well.

So I really wonder if results would be different in some people if they did not increase mental or physical exertion significantly for a long while (or even decreased it if pre-Abilify they were overexerting).
 
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@leokitten Thanks for filling in the blanks on Martin's story re:crashes. I'm moderate/severe and can't keep up with every post.

leokitten said:
So I really wonder if results would be different in some people if they did not increase mental or physical exertion significantly for a long while (or even decreased it if pre-
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It's easy to talk about pacing, but it's a nightmare to do even when you're in my state, and it was so much harder when I was mild and felt fairly OK until I suddenly didn't.

To pace if I had a rapid improvement to mild again... Gosh. I'd need watching, and chaining to my bed for regular naps or I'd be off running through fields.
 
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Squeezy said:
It's clear that he massively overdid it. He leapt back into his life with gusto, after several years spent in a living death. I don't blame him one bit.

I still think it's a cautionary story, even with knowledge of his crashes. Take caution about doing too much, too fast, whether you get signs and ignore them, or no signals at all.
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Yes I agree, sorry I thought you meant by a cautionary tale regarding trialing a new treatment like Abilify. Others taking it have continued to gain or maintain improvements, and from what I can see they are doing it by taking it extremely slowly and not adding any significant or consistent exertion like work, etc.
 
leokitten said:
Others taking it have continued to gain or maintain improvements
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I think people are making 10 to 20% improvements at most, and several are saying it’s wearing off effectiveness. I had no improvements at all, and it actually made my symptoms worse, especially brain fog and fatigue. I think it’s worth trying for people if you can access, but definitely not thinking abilify will be a huge drug for us, and we have to consider placebo responses here in some cases, for example people saying it works at 0.1mg, or it works after an hour for 20 minutes, or it worked for a few weeks and then stopped. These are unlikely to be real responses, IMHO, just usual fluctuations in symptoms.
 
I disagree with most of the above post. I had a real dramatic response that was more than a 10% improvement (went from moderate to mild) It was not a placebo response. I am noticing reduced response at about 3 months, suggesting tachyphlaxis.

I think butydoc had a response at .1 mg—why should I doubt him?—he was at a severe level. If it’s not working for you maybe you haven’t been on it long enough?
 
Hi @Jaybee00, I am not saying it’s not going to be helpful for some ME patients, but that I’m not sure it will be a “huge” drug for most of our community in terms of long lasting large improvements. This is just my opinion based on the trials people have done.. I could 100% be wrong!

I tried it for 6 weeks. I felt worse so stopped. Considered going for longer but felt it was making my cognition and fatigue worse and they are already bad.

You said you don’t have PEM as a major component, so whatever disease you and I have is probably quite different. Martin also looks different to me (I can walk about 800 to 1400 steps a day as long as just around house, short duration). I think ME probably is more than one biological process, that we could all be quite different, so of course it won’t work for everyone.
 
Jaybee00 said:
I think butydoc had a response at .1 mg—why should I doubt him?—he was at a severe level. If it’s not working for you maybe you haven’t been on it long enough?
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Also, I just want to say that it’s not doubting someone to not know if their response is fluctuating disease, placebo or real improvement. They are experiencing something real, regardless.

I personally have experienced all of these things and multiple times thought something was helping me only to realize with time that it was a fluctuation or my own hopeful response to treatment. Or at the start of my illness, an actual improvement that I then f’d up by overdoing it. Sometimes people take the idea of placebo as insulting, but it’s a real measured response in all patient populations.
 
Squeezy said:
@leokitten Thanks for filling in the blanks on Martin's story re:crashes. I'm moderate/severe and can't keep up with every post.

It's clear that he massively overdid it. He leapt back into his life with gusto, after several years spent in a living death. I don't blame him one bit.

I still think it's a cautionary story, even with knowledge of his crashes. Take caution about doing too much, too fast, whether you get signs and ignore them, or no signals at all.



It's easy to talk about pacing, but it's a nightmare to do even when you're in my state, and it was so much harder when I was mild and felt fairly OK until I suddenly didn't.

To pace if I had a rapid improvement to mild again... Gosh. I'd need watching, and chaining to my bed for regular naps or I'd be off running through fields.
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Thanks for the warning I have been in touch with Martin ever since he became bed-bound in February 2018 so I know how bad he was , He crashed last week because he walked a flight of stairs and walked through the house .
AS we know abilify is not a cure and we still have to pace very carefully ,hopefully I can continue and not overdo it.
 
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Braganca said:
Also, I just want to say that it’s not doubting someone to not know if their response is fluctuating disease, placebo or real improvement. They are experiencing something real, regardless.

I personally have experienced all of these things and multiple times thought something was helping me only to realize with time that it was a fluctuation or my own hopeful response to treatment. Or at the start of my illness, an actual improvement that I then f’d up by overdoing it. Sometimes people take the idea of placebo as insulting, but it’s a real measured response in all patient populations.
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IMO I don’t think there is much placebo effect with ME, especially as the years go on with this illness I find my fluctuations are very slow and go over many many months to years. I feel like total shit all day every day and the baseline symptoms fluctuate only very slowly. So if I take something and within a few days I have this really sudden change and can get out of bed and stay out of bed when I haven’t been able to for over two months then there’s no other explanation.
 
Interesting review of research on the impact of inflammation on the dopamine system as well as a theoretical model and computational method trying to connect it all.

Could be a hypothesis as to why Abilify and dopaminergic agents have some partial efficacy in ME, even if it is temporary (so only a part of the ME symptom story, not for example what are the cause(s) of the chronic inflammation).

https://www.s4me.info/threads/can’t...treadway-mt-et-al-trends-cogn-sci-2019.17985/
 
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I would be cautious about dopaminergic drugs in ME/CFS. I think these approaches just mask the symptoms while the underlying disease process is still there and possibly getting worse while you are overexerting without the warning signal of PEM.

A friend of mine who has had ME/CFS for 40+ years with no placebo responses had a miraculous response to another dopaminergic drug (bupropion) and was able to exercise and feel motivated again but after 3 weeks or so crashed to square one with no warning. The drug did not work a second time. This is very common in ME/CFS.

My experience with keto (which also raises catecholamines a lot) was super dramatic but after a number of months I crashed to a more severe state than ever before.

This is a classic problem with all psychotropic medications: tachyphylaxis. For some people, meds seem to make the brain more vulnerable to relapse and worse off than it was before the medication. Caveat emptor.
 
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