Abilify- Stanford Clinic Patients

leokitten

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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.
This is not true, I’ve been reporting how it’s continued to work for me after taking a break. There are other people who’ve reported the same thing, just not here but on other forums.

I just finished my second cycle of it for 5 1/2 months. It worked much the same as the first time except with the differences right at the beginning that I described in this thread and the honeymoon period with pretty much zero ME symptoms was a bit shorter than the first time. But the period after that was the same as the first time. Im now taking another 5-6 month break before cycling back on it.
 
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leokitten

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And the honeymoon period is quite astounding, this second time it last only about 1 1/2 months, but I experience few ME symptoms during this time and can resume many normal activities, even some exercise like long walks. Whatever low dose Abilify is doing in the brain and body essentially silences major ME symptoms for me.

I know I’ve said it before, but it bears repeating, while I don’t think Abilify is a treatment for many, its astounding effects on people, even those for whom it stopped working, really should give researchers some clues as to the biological basis of ME, or at least it’s downstream biological effects which are causing major symptoms.
 

hapl808

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And the honeymoon period is quite astounding, this second time it last only about 1 1/2 months, but I experience few ME symptoms during this time and can resume many normal activities, even some exercise like long walks. Whatever low dose Abilify is doing in the brain and body essentially silences major ME symptoms for me.

I know I’ve said it before, but it bears repeating, while I don’t think Abilify is a treatment for many, its astounding effects on people, even those for whom it stopped working, really should give researchers some clues as to the biological basis of ME, or at least it’s downstream biological effects which are causing major symptoms.
Something I've been considering. What was your level of severity when you started Abilify the first time? What were your physical or mental PEM triggers, and general level of health?
 

leokitten

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Something I've been considering. What was your level of severity when you started Abilify the first time? What were your physical or mental PEM triggers, and general level of health?
Moderate ME almost all housebound, with periods of time bedridden. Triggers? All types of exertion. PEM for doing anything other than lying in bed. Exercise would kill me. Only other health issue is psoriasis, so without ME would have no other issues.
 

hapl808

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Moderate ME almost all housebound, with periods of time bedridden. Triggers? All types of exertion. PEM for doing anything other than lying in bed. Exercise would kill me. Only other health issue is psoriasis, so without ME would have no other issues.
Thanks for the info. Were all your exertion triggers physical, or would mental exertion also trigger?

Remarkable that 'anything' gave you such a honeymoon period from moderate, even if it didn't last. I wish I had done more things like Abilify when I was moderate, but really if I had just avoided more triggers and pushing through I'd likely be less severe. Things like TCM and PT helped me slightly back in those days.

Anyways, thanks again for the info.
 

leokitten

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Thanks for the info. Were all your exertion triggers physical, or would mental exertion also trigger?
Both, but significant physical exertion will bring about PEM much, much faster after less exertion than mental. I can handle mental exertion at home in a quiet environment. But mental exertion like taking in a lot of stimulation from my surroundings, from many things happening around me like doing things outside for significant time, will eventually overwhelm me and I will get a lot of PEM.

The Abilify honeymoon period lasted for like 3 months the first time.
 

lenora

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Yes, I believe it was abilify but Whitney only took small amounts of the tab to make the hospital trip. Either Janet or Whitney (both Dafoe) should be contacted in order to get the exact amount.

At that time he wasn't on it on a regular basis...I'm fairly sure. @leokitten....I have also heard of people who have been able to go back on abilify, but for most it doesn't seem to be the case. I'm glad it worked for you...and hope it continues to do so.
 

hmnr asg

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Has anyone tried amisulpride to maybe fix the poop out issue ? I'm not able to get any because it's not FDA approved in the USA but maybe folks in Europe can give it a try? Either as s substitute or an augmentation with abilify?

I went again to Stanford to ask Dr Bonilla for mestinon and when I told him abilify has stopped working for me he seemed surprised and said it doesn't poop out for his other patients (I call bs!) And gave me another script for abilify despite me telling him I have tried it like four more times with holidays if various lengths with zero success.
 

Treeman

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Hi

This is a long thread and no chance I can read it all. So can anyone tell me if they have or know of anyone who has sustained success with low dose abilify? Thanks.
Some feedback.

I have severe ME/CFS trailed abilify and had no response.

My wife has long covid, severe tried abilify and has had success. She stopped for a short time and within a couple of days the positive effects wore off. Once she started again the positive effects came back after a few days.

Her activity went from 2.6 hrs per day to 5.2 hrs per day.
 
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leokitten

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Yes, I believe it was abilify but Whitney only took small amounts of the tab to make the hospital trip. Either Janet or Whitney (both Dafoe) should be contacted in order to get the exact amount.

At that time he wasn't on it on a regular basis...I'm fairly sure. @leokitten....I have also heard of people who have been able to go back on abilify, but for most it doesn't seem to be the case. I'm glad it worked for you...and hope it continues to do so.
There’s no way Whitney used Abilify for anything that required immediate action like trips to hospital or anything like that. You’re thinking about lorazepam.

Abilify is not a fast acting or short acting drug, it takes many days to a couple weeks to build up in your system to start working, and it’s also a drug that continues working for weeks after you stop taking it, both of these because of it’s extremely long half life.

I’ve been off of it for over a month now and reverted back to my baseline, actually in the middle of the second crash I’ve had since it stopped working about three weeks after I stopped this last cycle. If I take it again right now it will do nothing for me even in a couple days. Takes min 1 week to 2 weeks of taking it again after it’s fully out of your system for it to start working again.
 
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leokitten

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Some feedback.

I have severe ME/CFS trailed abilify and had no response.

My wife has long covid, severe tried abilify and has had success. She stopped for a short time and within a couple of days the positive effects wore off. Once she started again the positive effects came back after a few days.

Her activity went from 2.6 hrs per day to 5.2 hrs per day.
I’m quite surprised that she’s had this experience. It has an extremely long half life of like 75 hours or so. Was she on like a nano dosage?
 

mitoMAN

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There’s no way Whitney used Abilify for anything that required immediate action like trips to hospital or anything like that. You’re thinking about lorazepam.

Abilify is not a fast acting or short acting drug, it takes many days to a couple weeks to build up in your system to start working, and it’s also a drug that continues working for weeks after you stop taking it, both of these because of it’s extremely long half life.

I’ve been off of it for over a month now and reverted back to my baseline, actually in the middle of the second crash I’ve had since it stopped working about three weeks after I stopped this last cycle. If I take it again right now it will do nothing for me even in a couple days. Takes min 1 week to 2 weeks of taking it again after it’s fully out of your system for it to start working again.
yes Whitney got Ativan (Lorazepam) 4.5mg IV from what I remember for hospital transport. Not Abilify for this purpose.
 

lenora

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Thanks @Treeman.....you're quite right. Ever since my "run-in" with my autoimmune encephalitis my mind hasn't been as sharp in the least. Plus, so many new drugs are being used, that it does get confusing at times. (Yes, it's true....I came aboard at a time when there were no drugs, nothing except suffering.)

That's why it's important that younger, more knowledgeable minds are involved in this. We just run out of energy to think. I should add that I was one of the more fortunate patients with my AE, it's a nasty business to confront. No symptoms for two years now. Fortunately.

You're a traditional Englishman (mushy peas), so I'd like your take on "Christmas Remembrances" under
"What's New" in the above Forum. I wouldn't mind betting a crown in my cracker that you like plum puddings...right? Let me know. Yours, Lenora
 
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Hi all :),

After trying Mestinon with no success I started Abilify two days ago. 0,1mg

I will report here how I do with it.

Hugs!:hug:
This is my 7th day on 0'2 mg and I'm feeling much worse. Hard flu-like feeling and a moment ago I had a big dizziness which scared me a little bit.

Not sure what to do. I'm wondering if this worsening will be transitory, during the titration phase and then feel better.

If I stop it all this suffering will be for no reason.

Also, as this med has paradoxical mechanism of action in micro doses not sure if it's better idea lowering the dose or titrating it up. :confused:

Any thoughts would be welcome...
Oh..and happy christmas for all of you!
:p
 
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