• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Abilify- Stanford Clinic Patients

stefanosstef

Senior Member
Messages
528
Yeah I think it’s starting to wear off for me... I’m about day 70.

Strangely naltrexone or LDN might help here to augment Abilify.

https://ldnresearchtrust.org/sites/default/files/LDN_Depression_paper.pdf

And here

http://www.dr-bob.org/babble/20060108/msgs/598956.html

The similarities between this and my experiment are a bit crazy :D
I too found out that pramipexole with LDN give me great improvement!Much more than either if them solo, especially LDN solo which give me maybe 10%.
 

leokitten

Senior Member
Messages
1,541
Location
U.S.
@leokitten I actually ordered celebrex from my doctor. Do you think its a good idea to combine with Abilify? I cant do LDN because im on cymbalta (I think youre not supposed to use it along with an antidepressant? im not sure).

Always work with your doctor to determine what is best for you. We’ve mentioned Celebrex in this thread because of the anecdotal reports regarding its synergistic effect with Abilify and how it supposedly keeps Abilify working.

Please also make sure to punch in all the drugs you are taking incl Celebrex now into a drug interactions checker.
 

stefanosstef

Senior Member
Messages
528
Always work with your doctor to determine what is best for you. We’ve mentioned Celebrex in this thread because of the anecdotal reports regarding its synergistic effect with Abilify and how it supposedly keeps Abilify working.

Please also make sure to punch in all the drugs you are taking incl Celebrex now into a drug interactions checker.
You can use LDN with antidepressants.It is supposed to only interact theoritically with opioids but in practce it's quit unlikely.I bought Celebrex but I only took 1 pill because my stomach made loud and weird sounds after that pill and I read in side effects that it can rarely cause life threatening stomach bleeding, so I stopped.From what I remember here even for the people it worked it stopped after a while.
 

hmnr asg

Senior Member
Messages
556
Always work with your doctor to determine what is best for you. We’ve mentioned Celebrex in this thread because of the anecdotal reports regarding its synergistic effect with Abilify and how it supposedly keeps Abilify working.

Please also make sure to punch in all the drugs you are taking incl Celebrex now into a drug interactions checker.
I feel like for us cfs patients maybe we shouldn’t take meds like normal people since somehow cfs “adapts” to new meds and improvements disappear. This seems to be a trend with many interventions that improve our condition, almost all of them from my experience fizzle out after a while. Maybe we should keep the cfs guessing. Of course you can’t do that with abilify but maybe with Celebrex ? Maybe we can take every other week ? I’m not sure really.

I tried this with Lyrica and Ritalin and it seems to work. Ritalin once a week can usually help me do some house chores ( of course I make sure I take plenty of rest after). And Lyrica helps with my brain fog And sleep if I don’t take it too often.

I guess it’s expected that abilify will fizzle out too. But I will try these strategies if it does stop:
-try upping the dose a bit
- try ldn augmentation ( for sure I will check interactions)
-try Celebrex augmentation
 

Badpack

Senior Member
Messages
382
I wouldnt touch abilify with a ten foot pole. Even if you get better first, you probably just pay for it later even harder. Its energy on pump, rented from the future you.

"mitochondrial complex I- or complex II-linked to respiratory rate were measured using mitochondria isolated from pig brain. Complex I activity was decreased by chlorpromazine, haloperidol, zotepine, aripiprazole, quetiapine, risperidone, and clozapine. Complex II + III was significantly inhibited by zotepine, aripiprazole, quetiapine, and risperidone. Complex IV was inhibited by zotepine, chlorpromazine, and levomepromazine. Mitochondrial respiratory rate was significantly inhibited"

The damage to the mitochondria via longterm use cant be assumed at this point for Cfs patients. The energy high from taking it pretty sure will be followed by a PEM crash never seen before a few weeks/months down the line.
 

choochoo

Senior Member
Messages
130
I wouldnt touch abilify with a ten foot pole. Even if you get better first, you probably just pay for it later even harder. Its energy on pump, rented from the future you.

"mitochondrial complex I- or complex II-linked to respiratory rate were measured using mitochondria isolated from pig brain. Complex I activity was decreased by chlorpromazine, haloperidol, zotepine, aripiprazole, quetiapine, risperidone, and clozapine. Complex II + III was significantly inhibited by zotepine, aripiprazole, quetiapine, and risperidone. Complex IV was inhibited by zotepine, chlorpromazine, and levomepromazine. Mitochondrial respiratory rate was significantly inhibited"

The damage to the mitochondria via longterm use cant be assumed at this point for Cfs patients. The energy high from taking it pretty sure will be followed by a PEM crash never seen before a few weeks/months down the line.

Please take into account that the low dose regimen discussed here effectively change antipsychotics into totally different drugs. Furthermore it is looking more and more likely that the problems seen in mitochondria are a result of activity upstream and maybe be a result of something far more disease defining i.e. a chemical imbalance ( which seems highly probable ).
 
Last edited by a moderator:

choochoo

Senior Member
Messages
130
Ive never believed that this illness has a problem with mitochondria. I believe we have an autonomic problem with the effects on mitochondria being knock-on. Solve the root cause and the myriad of knock-on effects should in theory correct themselves.
 

hmnr asg

Senior Member
Messages
556
I also agree that this medication could potentially be dangerous but this is the best thing in a long time to help a large number of patients. I think it’s worth a try and I think the risk is worth it !

We will find out soon enough when the people who have started their experiment with abilify report back after a few months. As for me I think I have been overdoing it and need to slow down. Definitely had a bad day and I’m sensing an impending crash.
 

Badpack

Senior Member
Messages
382
@choochoo i don't need to know how abilify works in Cfs to know the well documented side effects of long term use of abilify which are document over years. I dont tell anyone what to do with his/her own body. Im just placing a warning to not jump on the next hyped thing for Cfs without very good decision time beforehand.
If ppl get better, im happy for them. Im just deciding for me to leave this one to others and hope that ppl who do take it, know the risks associated with psychotropic drugs. Atypical antipsychotics have antimitochondrial effects.
 

hmnr asg

Senior Member
Messages
556
@choochoo i don't need to know how abilify works in Cfs to know the well documented side effects of long term use of abilify which are document over years. I dont tell anyone what to do with his/her own body. Im just placing a warning to not jump on the next hyped thing for Cfs without very good decision time beforehand.
If ppl get better, im happy for them. Im just deciding for me to leave this one to others and hope that ppl who do take it, know the risks associated with psychotropic drugs. Atypical antipsychotics have antimitochondrial effects.

We just discussed at great length that everyone clearly understands that there could be side effects. If you go back in this thread you will see there are a few people who raise concerns and others agree that there could be side effects. Thank you for the warning.
 

hmnr asg

Senior Member
Messages
556
@choochoo I was an MD before getting sick with Cfs. I wouldnt touch it, thats all. But good luck to you then.
Because while we are taking a chance and we are trying *experimentally* to see if this thing works, every other post is someone who screams: SiDe EFFectZZ!!
We know we are taking a chance obviously. And we are sharing our story for the sake of others. I think its very possible that i might crash after a while. But at least we are contributing something to the community. I dont mind being a guinea pig if it could help people in the long run. I plan (as others are) to keep updating our story with abilify on this thread.
 
Last edited by a moderator:

Badpack

Senior Member
Messages
382
@hmnr asg Well its less about screaming side effect and more about saying it directly affects the energy production. Nothing against being a guinea pig. Im sick for 6 years now and i took so many different risky things, so i totally understand. But taking something that directly damages the mitochondria just doesnt sound wise to me.
 
Last edited by a moderator:

hmnr asg

Senior Member
Messages
556
@hmnr asg Well its less about screaming side effect and more about saying it directly affects the energy production. Nothing against being a guinea pig. Im sick for 6 years now and i took so many different risky things, so i totally understand. But taking something that directly damages the mitochondria just doesnt sound wise to me.
I apologize if I sounded rude. I have been sick for 10 years and very often I wish i was dead given how much my existence has shrunk. I’m willing to take the risk and I understand your concern (and others who have mentioned similar things on this thread). But I decided to roll the dice. Believe me there is not much to lose on my end at this point. And maybe at least I can be a data point on this forum for others to use in forming some kind of hypothesis.
 
Last edited by a moderator:

Badpack

Senior Member
Messages
382
@hmnr asg all is fine. I probably worded my warning to harsh to. I know the feeling. Im severe too and lie in my bed 23h. But everytime i thought f.. it. Just take it and see what happens, nothing can be worse than the situation now, i fell a little deeper into the cfs trap. Just because i think it cant get worse, sadly it can. So just be very thoughtful with the choices. Hope the best for you and all Cfs ppl out there.
 

JES

Senior Member
Messages
1,318
A large number of drugs can potentially damage the mitochondria, but what matters is the extent. Antivirals like Valtrex do this as well, I experienced a major worsening following a short course. On the other hand, quite a few people with ME/CFS report no difference or some even end up feeling better with large doses of antivirals, so it's very individual. I haven't noticed nearly anything as severe as the reaction I had to Valtrex with antidepressants or antipsychotics at low dose. Then again, I'm pretty sure I'd experience a major reaction if I attempted Abilify at the dosage used in schizophrenia, but this isn't the idea here.
 

stefanosstef

Senior Member
Messages
528
@choochoo i don't need to know how abilify works in Cfs to know the well documented side effects of long term use of abilify which are document over years. I dont tell anyone what to do with his/her own body. Im just placing a warning to not jump on the next hyped thing for Cfs without very good decision time beforehand.
If ppl get better, im happy for them. Im just deciding for me to leave this one to others and hope that ppl who do take it, know the risks associated with psychotropic drugs. Atypical antipsychotics have antimitochondrial effects.

I understand your position but some people are not mild cases and they don't put the same things on the scale.The side effects you have in mind have to do with full dose aripiprazole.Also I wouldn't call it "hyped" when the Stanford use it and announced it, even semi officially, as a very effective treatment.


A large number of drugs can potentially damage the mitochondria, but what matters is the extent. Antivirals like Valtrex do this as well, I experienced a major worsening following a short course. On the other hand, quite a few people with ME/CFS report no difference or some even end up feeling better with large doses of antivirals, so it's very individual. I haven't noticed nearly anything as severe as the reaction I had to Valtrex with antidepressants or antipsychotics at low dose. Then again, I'm pretty sure I'd experience a major reaction if I attempted Abilify at the dosage used in schizophrenia, but this isn't the idea here.

If I remember correctly, damage to mitochondria doesn't show signs until the majority of them become defective.Then it manifests via multi system disorder.
 

choochoo

Senior Member
Messages
130
Not experimenting will not improve treatment of this disease. On the contrary, it will improve understanding and treatments. Without people willing to take a calculated risk our understanding will never advance. Sad but true.
 
Last edited: