Abilify- Stanford Clinic Patients

[mitoMAN]

If I remember corerctly, my ex girlfriend took Abilify in the morning and Quetiapine in the night. So they were different mechanics involved? Quetiapine makes tired for sure. Abilify contrary?

She had shizophrenic disorder however.

 

[hmnr asg]

The Stanford people also prescribed abilify for me but because I was taking cymbalta I thought maybe I should wait until after I quit cymbalta ( I have been trying to wean myself off of it because of the size effects and it's been hell).

I will definitely give it a try once the cymbalta is out of my system ( I know there are no major interactions but I just didn't want to be taking two psych medications at the same time ).

And to the people who are being nay sayers, I say anything beats CFS, I will take my chances . I think anyone understands there are risks and nobody is taking an antipsychotic medication lightly. Plus the side effects sound like fun: compulsively gambling and sex ? Beats being bed bound (jokes!)

I am replying to myself here lol. so after more than a year of having been prescribed Abilify by stanford people and deciding not to to take it, I decided to go into my medicine cabinet and get the old bottle of abilify and give it a shot. I decided to try it because:
1- I was desperate (continue to get worse)
2- read a few positive stories

So currently I am on cymbalta (40 mg) and abilify (1mg, super low dose). Its been two weeks since I started the abilify (I have been on the cymbalta for about two years now). The first week was terrible side effects, I was very irritable, much like when I start a new antidepressant.
But since then I have been doing well and my energy is a lot higher. This is according to my wife as well who told me I seem to have much more energy. Its obviously no cure in any way, but so far im doing well and Im glad I tried it. Most of the things that help me usually stop working in a few weeks, so I will let everyone know how things are going in a few months on this thread.

Edit: there is a possibility that my benefits are not just due to the effects of abilify, but that there is some kind of synergistic effect between cymbalta and abilify. I read on another thread that some people in sweden patented the use of an antidepressant and a third gen antipsychotic for use in CFS. I had originally been planning on quitting cymbalta before I was going to start abilify, but quitting cymbalta proved impossible. Also when I realized that there could potentially be benefits from using both at the same time I decided to take the abilify and so far so good.

Edit : also the pill makes me very wired which sucks. I can’t stop talking to my wife and I’m just very fidgety and wired and somewhat agitated. This is the same side effect that @Hip experienced which made him switch to amisulpride I believe. But I’m in the USA and we don’t have amisulpride. Also I’m very constipated since starting the pill which sucks since I already had IBS-C.

 

[Pearshaped]

Whitney Dafoe made also improvements on Abilify . When I read the side eefects I wonder if it increases dopamine.

I find it strange that such a medication should help with ME.
but whatver works...

 

[Martin aka paused||M.E.]

Whitney Dafoe made also improvements on Abilify . When I read the side eefects I wonder if it increases dopamine.

I find it strange that such a medication should help with ME.
but whatver works...

It reduces neuroinflammation. That’s why it works

 

[bread.]

I am glad it works for people, but to say it „reduces neuroinflammation“ is a way of saying I have no idea what it does, it most likely makes people feel better via higher dopamine in the synaptic cleft for the most part. If you take 10 people from the street a significant part of these people will „feel better“ on abilify.

 

[hmnr asg]

I am glad it works for people, but to say it „reduces neuroinflammation“ is a way of saying I have no idea what it does, it most likely makes people feel better via higher dopamine in the synaptic cleft for the most part. If you take 10 people from the street a significant part of these people will „feel better“ on abilify.

I agree that we have no idea why or how this works. Also agree that term "neuroinflammation" is thrown around here a bit too liberally.
But saying that it helps people feel better just because it would make *anyone* feel better is not correct. We have all been going over many medications that would make the average person feel better. Many of us have tried a ton of antidepressants and other psychotropic medications to no avail.

Also, people are not just "feeling better" as you say. They are functionally improving, myself included. Feeling better doesnt mean you can all of a sudden function at at a higher level. I could drink a few beers and it definitely makes me feel better but i still couldnt do my laundry.

So I think there is something going on in terms of its effects on CFS for some of us. But obviously nobody can really know what that is at this point.

 

[Martin aka paused||M.E.]

I agree that we have no idea why or how this works. Also agree that term "neuroinflammation" is thrown around here a bit too liberally.
But saying that it helps people feel better just because it would make *anyone* feel better is not correct. We have all been going over many medications that would make the average person feel better. Many of us have tried a ton of antidepressants and other psychotropic medications to no avail.

Also, people are not just "feeling better" as you say. They are functionally improving, myself included. Feeling better doesnt mean you can all of a sudden function at at a higher level. I could drink a few beers and it definitely makes me feel better but i still couldnt do my laundry.

So I think there is something going on in terms of its effects on CFS for some of us. But obviously nobody can really no what that is at this point.

Folks, if you doubt the effects you don’t have to take it. If you’re not very severe or severe with lots of symptoms don’t take it because you’re risking dangerous side effects. But for me personally sharing what helps feels a bit like being in a defensive situation. I’m not a bio chemist and I’m sorry I can’t tell you more but what I know from Stanford. Then you just have to wait until a phase III study is successfully completed ✔️ I suffered from very very severe ME. Was unable to communicate, had to be fed artificially... why do I think that it’s the anti inflammatory properties that helped? Because high doses of cortisone was the only other therapy that really made a difference.
what you do with these information is completely up to you.

 

[choochoo]

If it works, for those severely effected by this nightmare condition, it works, and this is all that matters. That said, Obviously all attempts should be made to keep adverse effects limited.

Ive never known ANY drug to significantly improve symptoms of people with severe ME.

Hopefully we can learn from this.

 

[JES]

While it may be common, it's not "just the way it is." These substances work in biochemical pathways, along with other biochemical pathways, and if they make a pathway work faster (or start working) the co-factors which may have been built up, get used faster, and then can get depleted. When you run out of a cofactor, that's when the substance seems to stop working.

That's one possible cause but not my primary concern, I meant more like tolerance. Perhaps one of the most common example is benzodiazepines, which stop working rather quickly as the body starts desensitizing GABA receptors in response, resulting in dependency. I believe Whitney Dafoe also had temporary success with Ativan, so it all points towards the fact that modulating neurotransmitters seems to result in an improvement in ME/CFS, but the concern is that the improvement may be temporary, just like with benzos.

Certainly there are then other downstream metabolic effects of these drugs which affect dozens of pathways, making it even more complicated, but I'm more concerned that the main mechanism by which these drugs help is prone to inducing tolerance over time.

 

[Martin aka paused||M.E.]

W

That's one possible cause but not my primary concern, I meant more like tolerance. Perhaps one of the most common example is benzodiazepines, which stop working rather quickly as the body starts desensitizing GABA receptors in response, resulting in dependency. I believe Whitney Dafoe also had temporary success with Ativan, so it all points towards the fact that modulating neurotransmitters seems to result in an improvement in ME/CFS, but the concern is that the improvement may be temporary, just like with benzos.

Certainly there are then other downstream metabolic effects of these drugs which affect dozens of pathways, making it even more complicated, but I'm more concerned that the main mechanism by which these drugs help is prone to inducing tolerance over time.

Why?

 

[JES]

W

Why?

It's my speculation that these drugs may stop working the same way as benzos, SSRIs and other antidepressants tend to do over time, but don't read too much into this, it's just speculation for now. Whitney Dafoe has been on this medication since spring(?) and hasn't regressed as far as I know, so fingers crossed.

 

[Martin aka paused||M.E.]

It's my speculation that these drugs may stop working the same way as benzos, SSRIs and other antidepressants tend to do over time, but don't read too much into this, it's just speculation for now. Whitney Dafoe has been on this medication since spring(?) and hasn't regressed as far as I know, so fingers crossed.

I know someone who takes it for 1 3/4 years and is still improving on it. So I don’t think that it’s the same problem as with benzodiazepines ... the problem with benzos is that the brain gets used to it and needs more.

 

[Learner1]

That's one possible cause but not my primary concern

Indeed, it is a major problem and should be a primary concern.

I meant more like tolerance. Perhaps one of the most common example is benzodiazepines, which stop working rather quickly as the body starts desensitizing GABA receptors in response, resulting in dependency

This happens with some drugs, but not most, and rarely with supplements.

it all points towards the fact that modulating neurotransmitters seems to result in an improvement in ME/CFS,

It can, but it's not a major fix. The metabolomics studies didn't point out neurotransmitter abnormalities.

Though, I have had improvements with increasing dopamine with tyrosine and with Kuvan, and sleep better with increased GABA.

Certainly there are then other downstream metabolic effects of these drugs which affect dozens of pathways, making it even more complicated, but I'm more concerned that the main mechanism by which these drugs help is prone to inducing tolerance over time.

The downstream metabolic effects of drugs affecting dozens of pathways is very concerning. And, it is the many side effects and unintended consequences that can cause patients all kinds of short and long-term problems.

Any drug that causes tolerance over time should be very concerning, and one should think very hard about the consequences before taking one. There are many other drugs and supplements that are far safer and do not induce tolerance.

 

[choochoo]

We don't yet know if tolerance is an issue with Abilify for the very severe. The other two things that, as yet are not established are A) Are any gains made whilst on the drug maintained at any level when Abilify is stopped or reduced further?

And

B) The half-life is relatively long, so would 2mg every other day will be effective?

 

[andyguitar]

There are many other drugs and supplements that are far safer and do not induce tolerance.

So then if it is possible to determine what Abilify is doing (in respect of it's effect on Dopamine and Serotonin receptors) then it might be possible to mimic that effect using nutritional and herbal supplements. The caveat being that Abilify might be having an unknown effect.

 

[choochoo]

The half-life for aripiprazole is a lengthy 94 hours. Nearly double that of Diazepam.

Short half-lives can also be a factor of drug dependency.

 

[choochoo]

I am motivated less my how it works and more by if it works.

 

[hmnr asg]

I am motivated less my how it works and more by if it works.

Exactly !
There is a binary choice here, try it or not.
Of course there might be side effects, there is no free lunch in life. But as always what matters is whether or not the benefits outweigh the side effects.

 

[YippeeKi YOW !!]

If you take 10 people from the street a significant part of these people will „feel better“ on abilify.

Since Abilify is an anti-psychotic (specifically, schizophrenia), not a dedicated anti-d or benzo, I can't say that I agree with your hypothesis, even tho aripiprazole works on the dopamine and 5ht receptors as a partial agonist. And with dopamine it seems to work almost as a natural modulator / adaptogenic, whether your dopamine is too low or too high, something that makes me a little suspicious.

Particularly since the size of the dose is critical for ME patients using this experimental approach, I doubt that any random 10 people off the street would have a positive reaction to it at what are considered 'normal' treatment doses, which is what one would assume 10 random people would take .....

 

[YippeeKi YOW !!]

I could drink a few beers and it definitely makes me feel better but i still couldnt do my laundry.

....

Great point, elegantly put @hmnr asg