• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Abilify- Stanford Clinic Patients

L

lenora

Senior Member
Messages
4,929
Hello @nsdn.....It depends on exactly what you mean by "low dose." The longest I've ever heard, on a daily basis, that is, would be approx. 5 mos.

Some people don't use it regularly because it isn't long lasting. I'm afraid it's a case of trial and error. I know (from reading), that some can't even return to the use of it and have it work. Yours, Lenora.
 
Hipsman

Hipsman

Senior Member
Messages
543
Location
Ukraine
So we know that cycling Abilify is a bad idea due to kindling [Ref]

But what about just changing dosage say from 2mg back to 1mg, then back to 2mg, and so forth... Would that cause kindling or other problems?
I'm asking this, becouse I remeber getting bigger improvment from Abilify for first week of changing dosage from 1mg to 1.5mg and then to 2mg, so I think for me changing dosages might give additional improvments.
@leokitten @jaybee00
 
Poggers

Poggers

Messages
9
Hipsman said:
So we know that cycling Abilify is a bad idea due to kindling [Ref]

But what about just changing dosage say from 2mg back to 1mg, then back to 2mg, and so forth... Would that cause kindling or other problems?
I'm asking this, becouse I remeber getting bigger improvment from Abilify for first week of changing dosage from 1mg to 1.5mg and then to 2mg, so I think for me changing dosages might give additional improvments.
@leokitten @jaybee00
Click to expand...

Pointing out that this entry is for alcohol and benzodiazepine specifically. My scientific knowledge is limited, but I want to share that my experience with depression/anxiety medication is fairly large (unfortunately). I've certainly experienced kindling from repeated attempts to discontinue Xanax, and thank the stars I'm off that type of GABA medication. But withdrawing from antidepressants and even Seroquel (an antipsychotic) did not produce kindling. I've also not experienced this with hydrocodone. (Opioids have their own problems!) So what's up for debate, as far as know, is which classes of medications induce kindling.

Of course, we're all different, so take my personal experience as that. The discussion here is great, (I don't want to come off as 'that poster who needs to be right'.) And I don't have a recommendation on cycling dosage. Most doctors would not recommend that, but, again, I don't know, and all ideas are good to discuss.
 
Poggers

Poggers

Messages
9
leokitten said:
Now on my second cycle for over three months. This second cycle has been slightly different in it’s progression. If you remember, this time around it started working faster at a lower dose, it took only 1 week at 0.25 and felt my ME symptoms melt away.

For the first two months things have been great, but as expected I plateaued and already started feeling that it’s slowly lose efficacy again, maybe this time at a rate slightly faster than the first time around.

Go figure,,, no understanding why. I wonder what the third cycle will be like, will the great time feeling normal last shorter and shorter?

Abilify continues to be so intriguing and really if a group of scientists wanted to figure out the core of a big ME subset, this drug is such a opportunity to bring forward much more understanding. With this medication I go from bedridden ME hell zombie with so many symptoms can’t think about anything, to almost NORMAL! How how how what ME dysfunctional system is it temporarily correcting?!?
Click to expand...

How long in between 'cycles' did you give yourself? I'm slowly making my way through this thread, and apologize if you've documented this already. And, I assume, it's because Abilify lost efficacy over time? I trialed it as a depression adjunct at 5 mg and it was horrid. I'm reading this thread to decide if .25 mg would be different. Thanks!
 
Poggers

Poggers

Messages
9
leokitten said:
Abilify, at least in an ME subset, definitely targets some very important ME pathology. For me though even though it has worked remarkably on almost all symptoms I can say it has zero effect on one major one.

At night I occasionally get strong gut and abdominal irritation, night sweats, itching, and the abdominal irritation causing I kid you not irritation shooting up my vagus nerve or spinal cord to my brain causing me to wake up almost violently and be suddenly wide awake and unable to sleep like it scrambled my brain. When it happens at night my next day is totally ruined it feels like it causes me poisoning brain damage and exhaustion I feel disgusting.

I’m guessing these symptoms are mast cell activation related as it’s the only thing that seems to line up. Abilify doesn’t seem to help at all with this and on these nights my sleep would be bad again.

I’m also guessing that Abilify doesn’t help an ME subset because their particular ME symptomatology is driven more by symptoms like this that aren’t helped. If I had this mast cell symptom cluster more frequently like I used to I could see myself finding Abilify not having such a positive effect.
Click to expand...

Hey, may I ask how much you are taking? I'm working backward through the thread (maybe not wise, idk!).
 
Poggers

Poggers

Messages
9
luckily, the story about me/cfs and abilify is not the same, as it continues to work for some. And the two sicknesses have only a vague similarity.
Click to expand...

It was part of the sequelae of the flu epidemic, IIRC, which might make it more applicable for some folks here.
 
Poggers

Poggers

Messages
9
mitoMAN said:
I have to say that 2.5mg is giving me some energy again BUT with the side effect of major depression and jittering, shivering attacks. (Jawbones jumping up and down as if I was freezing cold)
Click to expand...

This sounds like a potential side effect like a movement disorder. Did you discontinue Abilify? (I see this was written over a year ago.)
 
hmnr asg

hmnr asg

Senior Member
Messages
563
so as I mentioned a while back on this thread, abilify stopped working for me after two months.
I tried taking a several holidays, one lasting almost a year, retrying abilify at different doses and failing I decided to go back to the Stanford clinic.

I don't know what I was thinking since Bonilla is known to blame patients instead of abilify pooping out. This is exactly what he did and told me to try it AGAIN despite me telling him its been years that it has stopped working. My goal was to ask him for a script for mestinon which had worked for me (I obtained some from one of these online pharmacies but was hoping to get it through a legitimate pharmacy). He denied my request for mestinon and told me to try abilify again and if it still it didn't work he might consider giving me a script for mestinon (which I doubt he will).

However he said that in Italy there was a trial on amisulpride. I think I'm just going to order amisulpride from the internet (as well as mestinon). And never ever go back to that damn Stanford cfs clinic.

Edit: ops i forgot to mention. He said that according to his patients everyone continues to get better on abilify! I said what about all those people on cfs forums online that report abilify pooping out? he just shrugged and he said he doesn't know, maybe they crashed or maybe they're not his patients.
 
L

lenora

Senior Member
Messages
4,929
Well, we do know that abilify can stop working in many patients. I've never heard of anyone being able to pick up using it again.

Funny, as one of the people who is ultra-careful using abilify happens to have his father working as an ME Researcher (very well known) at Stanford.

I know that in TX it's almost impossible to get new prescriptions because the doctors themselves are so afraid of losing their licenses. This fear is real and crosses the line in all specialties. I do think the FDA now understands that it left good doctors with their hands tied during the fentanyl crisis. Special workshops were even held telling doctors about how not to lose their licenses. This was not fair to either the patient or the doctors.

Things seem to be very slowly loosening up again....but it's going to take awhile. Yours, Lenora
 
Poggers

Poggers

Messages
9
Thanks for your reply, and I'm sorry that it hasn't worked again, and that you received poor care from Stanford Clinic. I wonder if amisulpride will ever be greenlit in the US. I've heard it helps some people with depression as well. I wish you the best with amisulpride!
 
H

hapl808

Senior Member
Messages
2,132
Hipsman said:
Anyone looked if there is a aripiprazole (abilify) derivative in research that has less side-effects?

I'm asking because we have found Sephin1, witch is a derivative of guanabenz with much less side-effects. So this is a possibility.
Click to expand...

Has anyone tried guanabenz? Thought it was interesting that it was apparently being looked at for multiple sclerosis, but couldn't find any results. One study that seemed promising in 2015, another study that was terminated (no reason I could find), and another study that looked like it was starting recently.
 
You must log in or register to reply here.