Abilify- Stanford Clinic Patients

jaybee00

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Hey congrats on reading 69 pages. I stopped a while ago because it stopped working. I did get some pretty bad withdrawal effects on stopping that lasted for a while. I haven’t re-tested. There is a FB group on LDA, that may be of interest. @leokitten is in a bit of a bad spell and may not reply to thread, but he also went off. There are some people who don’t reach tolerance and have been on for 3+ years.
 
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Hey congrats on reading 69 pages. I stopped a while ago because it stopped working. I did get some pretty bad withdrawal effects on stopping that lasted for a while. I haven’t re-tested. There is a FB group on LDA, that may be of interest. @leokitten is in a bit of a bad spell and may not reply to thread, but he also went off. There are some people who don’t reach tolerance and have been on for 3+ years.
Thanks, 70 now.! Lol.

Yeah the withdrawal effects sound bad.. I already have trouble with RLS so not too keen on getting that as a side effect coming off. How long did your withdrawals last? Did you have any permanent benefit or are you back to how you were before?

Sucks to hear @leokitten is doing poorly, he seemed to be one of the most successful stories.
 

mitoMAN

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I think my insomnia got permanent worse even 5 months after Abilify discontinuiation. Just as a caution.
Also a friend of mine still has crippling muscle cramps after just one week of Abilify which never vanished half a year later.


This is a double edged sword especially for severe patients. Can be a holy grail - or your doom. lol.
 
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I think my insomnia got permanent worse even 5 months after Abilify discontinuiation. Just as a caution.
Also a friend of mine still has crippling muscle cramps after just one week of Abilify which never vanished half a year later.


This is a double edged sword especially for severe patients. Can be a holy grail - or your doom. lol.
That's terrible.. Any way to assess response more safely.? Trial 0.1 mg for a few weeks then stop..? Or you only notice the bad rebound issues after you've used it for some time.
 
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I was very optimistic about this drug from the first time this thread was posted. It sucks that if you stop using it all benefits go away and on top of that the drug never works again. not to mention long lasting side effects. I personally refrained from trying any self administered medication but I noticed I never have any withdrawal symptoms from anything I take for long periods of time. I used to take xanax for the day and zolpidem for the night for over 5 years and I stopped them in 3 weeks when my doses stopped working, didn't want to increase them any further. I also noticed that If I take two 1 day brakes in a week I could keep my doses steady.
 

leokitten

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Interesting analysis showing how genetic polymorphisms in healthy volunteers alter Abilify’s metabolic effects, and doesn't take much extrapolation from this example to imagine how regular genetic differences between people (in brain cells or others) could explain why in Abilify works in some and not in others with ME/CFS, and possibly why it can work again in some after a long break, etc.

Metabolic Effects of Aripiprazole and Olanzapine Multiple-Dose Treatment in a Randomised Crossover Clinical Trial in Healthy Volunteers: Association with Pharmacogenetics. Adv Ther (2021)

This also shows why I sometimes have constructive critique of ppls comments on other forums that a treatment doesn't work in ME, or it's only placebo effect, because they see anecdotally it doesn't work at all in some pwME. It's simply short-sighted and lazy thinking. Common genetic differences between ppl are one very obvious explanation as to why it might not work in some!

EDIT: this last paragraph was never meant to say that I believe Abilify is supposed to work for all pwME… absolutely not of course it won’t work in many and I have always believed this like every drug ever created doesn’t work in all. Even aspirin doesn’t work for some. But I mean something else entirely quite the opposite… that for the cohort of ppl for who it does work, that they should be believed at a cohort level (not just individual) that it’s real, not placebo effect, not an exaggeration, even if it works amazingly for only a few months.

And no we aren’t ppl with undiagnosed mental illness for which abilify working is some reveal of that. We never had mental illness only textbook ME. So something is really happening with a low dose of this drug in a SUBSET of pwME, and the faster we accept this the faster we will eventually arrive to some mechanistic understanding of this terrible disease.
 
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Wishful

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Common genetic differences between ppl are one very obvious explanation as to why it might not work in some!
Yes, like why did cumin work extremely well for me yet very few people report even minor benefits from it? It could be a rare genetic combination, or it could be an unusual microbiome variant or something I haven't even considered (alien parasite :eek:).

For those cases where someone reports an amazing treatment ... that doesn't work for others, it may be a matter of a unique situation where it does work for someone, but shouldn't be considered a treatment for other people with that disease. If it works for one person, but fails to work for the other millions of people, should it be claimed as a treatment?
 

lenora

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People write in with suggestions about what has worked for them. No, we're certainly not all equal in every our symptoms, let alone treatments for them.

I really don't like it when at age 75, and having had this for countless years, I'm made to feel like a failure if I end up having to be medically treated for something like anxiety. We each have to make our own choices based on the circumstances and we've all led different lives.

If you're fortunate enough to find something that works, by all means share it, but if it doesn't work for someone else it shouldn't be taken as a personal affront. There will be many complex answers and treatments for what ails us.

Thanks so much for saying what has worked for you....but understand if it hasn't worked for me. Yours, Lenora
 

leokitten

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People write in with suggestions about what has worked for them. No, we're certainly not all equal in every our symptoms, let alone treatments for them.

I really don't like it when at age 75, and having had this for countless years, I'm made to feel like a failure if I end up having to be medically treated for something like anxiety. We each have to make our own choices based on the circumstances and we've all led different lives.

If you're fortunate enough to find something that works, by all means share it, but if it doesn't work for someone else it shouldn't be taken as a personal affront. There will be many complex answers and treatments for what ails us.

Thanks so much for saying what has worked for you....but understand if it hasn't worked for me. Yours, Lenora
Sorry @lenora but where did I ever insinuate that? I’m not reading the same words I’ve written as you.

Im talking about people who say or imply, and I’ve literally written it exactly as such in my post above, that if Abilify doesn’t work in some but works amazing in others that those who are saying it’s really working are made to implicitly feel that it’s placebo effect or exaggerating, or that the drug isn’t a potentially effective treatment for this subset because it doesn’t appear to work in others.

This is very different from what you are thinking I wrote. Pretty much the other way around from what you think I wrote. I hope I’m clearer now.
 
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lenora

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Hi @leokitten.....I swear that this wasn't a direct response to your statement, but was mean for everyone, myself included. I feel that what works for one person, isn't necessarily the answer for others.

Should we try different things....absolutely, but we're not failures because they don't work and perhaps others don't realize that we understand that outlook. I really don't know.

If something works for you, fine....I'm truly glad. If it doesn't, catch your breath for a time and then move to something else. Sometimes there simply aren't any answers.

No, I definitely wasn't directing this to you personally. Perhaps I should just keep my thoughts to myself. Some-times being helpful can be totally misconstrued. Having to write something is definitely not the same as a conversation, person to person. I'm sorry that you feel the way you do. If anything, I was agreeing with you. Yours, Lenora
 

leokitten

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Hi @leokitten.....I swear that this wasn't a direct response to your statement, but was mean for everyone, myself included. I feel that what works for one person, isn't necessarily the answer for others.

Should we try different things....absolutely, but we're not failures because they don't work and perhaps others don't realize that we understand that outlook. I really don't know.

If something works for you, fine....I'm truly glad. If it doesn't, catch your breath for a time and then move to something else. Sometimes there simply aren't any answers.

No, I definitely wasn't directing this to you personally. Perhaps I should just keep my thoughts to myself. Some-times being helpful can be totally misconstrued. Having to write something is definitely not the same as a conversation, person to person. I'm sorry that you feel the way you do. If anything, I was agreeing with you. Yours, Lenora
Hey it’s no worry at all, I just wanted to clarify what I meant because I worried now a bit it could be misconstrued. We just crossed paths.

And trust me I really respect and understand many people on other forums. There are a lot of very knowledgeable and learned people, but many can be very jaded (understandably) and it can sometimes put blinders on.

There are people who say we need trials on low dose Abilify or this is suggestive of efficacy and appears to help for a significant subset. These are all positive and constructive thoughts. But there are other people who explicitly or implicitly slam or cast a lot of doubt on what an entire cohort of abilify responders have experienced, and they cast doubt without any evidence whatsoever, just guessing. Sure the cohort of responders do not have much scientific evidence either, other than a very significant and large anecdotal trend in a large group of people.

One thing that is very plausible is that quite a few subsets don’t have a different ME, but instead they have genetic differences in important pathways that prevent a specific intervention from producing benefit on a cellular target in ME that can work.

I think they really need to study abilify in ME cells etc to try and further understand how it might be helping. I know abilify isn’t an end all solution, but this could be a huge opportunity for some mechanistic understanding of ME that would be a real shame if it isn’t leveraged. We don’t get opportunities like this often at all.
 
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Wishful

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I know abilify cumin it’s an end all solution, but this could be a huge opportunity for some mechanistic understanding of ME that would be a real shame if it isn’t leveraged. We don’t get opportunities like this often at all.
The comment is the same whichever treatment works for a given individual. Could studying cumin's effect on PEM lead to an understanding--and treatment--of PEM? I think it's a possibility. Since funding is limited, which treatment should get the funding? I think they're both longshots, so it's hard to come up with a reasonable comparison. The deciding factor might be the fact that abilify would be profitable for someone, while cumin wouldn't be.
 

leokitten

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The comment is the same whichever treatment works for a given individual. Could studying cumin's effect on PEM lead to an understanding--and treatment--of PEM? I think it's a possibility. Since funding is limited, which treatment should get the funding? I think they're both longshots, so it's hard to come up with a reasonable comparison. The deciding factor might be the fact that abilify would be profitable for someone, while cumin wouldn't be.
Sorry I meant isn’t an end all solution typo and corrected. It isn’t an end all solution.

But last time I checked not cumin nor anything else except abilify, rituximab, and ampligen produced such a suggestive larger scale anecdotal response in so many people these last 10 years or more. Everything else has just been noise, only seeming to help a very small sliver of people that then rarely give follow up reports about what’s happening to them long-term and if they are still on it and if it’s helping the same. So I would have to constructively disagree with your argument.
 

leokitten

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@Wishful I think you are maybe the second person in my 9 years of having ME and being on forums that have reported a significant long term effect from taking cumin. It’s really really rare. This is how you decide what should percolate up the food chain or become ideas worth testing, scientists cannot think about individuals but need to look at larger group level anecdotal trends if they are going to use these sources of information for discovery and hypothesis testing in ME research. There are other approaches this is only one (looking at large groups of people testing drugs on their own)

And you might initially think this research wouldn’t benefit you, because abilify didn’t work but cumin has helped, but that not the case. Again, abilify isn’t an end all solution, it’s a tool to perform mechanistic studies to try and understand what is driving this illness and what abilify perturbs in ME cells that could explain some idea of what is going on. It could be what they see takes them down a path that really has little to do with abilify and helps many more people, including you and me.
 
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lenora

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As with everything, the size of the study matters. One study leads to another, but often they may be years apart. Research is an expensive proposition....and there are only so many $$ allocated. That's why it's so important that countries work together. We're fortunate that they do. Australia was one of the first to do so....many thanks as this was a lot of years ago.

Things are moving faster today. Yes, I understand that cumin works for many people....but then so do many "natural" things work for others. The Heart Foundation probably funded the research (& acceptance) of Co-Q 10 for those under 40, and then Ubiquinol for those over 40 as helpful to the heart muscle. It's also noted for helping with energy production.

I can't believe the sheer numbers of new enzymes that have been discovered in the years I was involved. So yes, different research is being done and that's a good thing. I don't know if the world of "natural" medicine provides it's own studies, that's a good question. Yours, Lenora.
 

Wishful

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Again, abilify isn’t an end all solution, it’s a tool to perform mechanistic studies to try and understand what is driving this illness and what abilify perturbs in ME cells that could explain some idea of what is going on.
Yes, but that applies to cumin and any other treatment that works for even one person. If the researchers had studied me while cumin was working reliably, they might have learned something useful. I haven't read much about abilify, but it seems to provide minor benefits for some people. In numbers that it works at all in, I suppose that it probably ranks higher than cumin, but I still consider both to be such longshots that there's not really much difference. I still think cumin's effect on me had a greater potential for figuring out what's involved with PEM, since it had such a dramatic and reliable effect. It might have showed some clear differences before/after on MRI or PET scans. An opportunity lost. :(

Abilify sounds like it provides some minor improvements for a while, so less likely to show dramatic neurological changes. Did any patients report full remission while taking it and switching back to ME if they forgot a dose? You can't do before/after testing if you can't predict who will get a remission, and a long delay for changes doesn't make before/after testing easy either.

I'm not anti-abilify, but I haven't read anything to convince me that it's likely to lead to an understanding of or relaiable treatment for ME.