Abilify- Stanford Clinic Patients

[leokitten]

What could be the benefit? Less side effects? Long live?

No benefit other than achieving a lower steady state concentration of drug compared to 0.25 mg/day without reducing the dose anymore. 0.25mg is likely the smallest dropper dose that can be reliably measured.

So 0.25 mg/48 hrs will result in a lower steady state concentration compared to 0.25mg/24 hrs.

 

[Martin aka paused||M.E.]

No benefit other than achieving a lower steady state concentration of drug compared to 0.25 mg/day without reducing the dose anymore. 0.25mg is likely the smallest dropper dose that can be reliably measured.

So 0.25 mg/48 hrs will result in a lower steady state concentration compared to 0.25mg/24 hrs.

Thank you!

 

[RL_sparky]

Apologies if already posted.
https://med.stanford.edu/content/dam/sm/dbds/documents/data-studio/abstract.20201118.pdf

" In a retrospective study, we reviewed the medical records of 101 patients who met the criteria for an ME/CFS diagnosis according to three separate case definitions (Fukuda, CCC, and IOM) and who received off-label Aripiprazole. Medical records were included for individuals evaluated in the clinic at least twice, representing periods before and after the use of the medication. The age range was from 18 to 84 years old (mean 51 y), with a gender distribution of 67% female and 33% male, and the duration of illness was from 1 to 54 years (median 10 years). The daily oral dose of Aripiprazole ranged from 0.2-2.0 mg/day (mean 0.94 mg/day). During each clinic visit, patients were asked to rate their symptoms on a scale of 0-10. Of the 101 patients taking Aripiprazole, 75/101 (74%) experienced an improvement in one or more categories: fatigue, brain fog, unrefreshing sleep, and frequency of post-exertional malaise (PEM) episodes. Twelve individuals (12%) had no observable difference in symptoms at the maximum dose of 2 mg, and 14 individuals (14%) reported worsening of symptoms or onset of side effects that led to discontinuation of the drug. These results suggest that Aripiprazole may effectively reduce symptoms of ME/CFS and warrants further investigation in a randomized clinical trial. "

 

[JES]

As has been pointed out before, Abilify has somewhat unusual pharmacodynamics in that it acts as a partial agonist of D2 receptors and it seems this is the case especially at lower dosages. This makes me wonder if the dosage could also be the key to avoid the loss of effect phenomenon.

Because of the long half-life, the effect from a decrease/increase in dosage would take quite a while to show up. Let's say Abilify stopped working a couple of weeks after the last increase of dosage, could it be that it actually stopped working because the steady-state concentration became too high for it to be effective for ME/CFS? It may be a bit of a long shot, but it seems to me like a possible hypothesis.

 

[Martin aka paused||M.E.]

As has been pointed out before, Abilify has somewhat unusual pharmacodynamics in that it acts as a partial agonist of D2 receptors and it seems this is the case especially at lower dosages. This makes me wonder if the dosage could also be the key to avoid the loss of effect phenomenon.

Because of the long half-life, the effect from a decrease/increase in dosage would take quite a while to show up. Let's say Abilify stopped working a couple of weeks after the last increase of dosage, could it be that it actually stopped working because the steady-state concentration became too high for it to be effective for ME/CFS? It may be a bit of a long shot, but it seems to me like a possible hypothesis.

As I said before, I was on 4mg for months without changing the dose

 

[stefanosstef]

@Martin aka paused||M.E. stick to that dosage for 10 days and judge it then.Let us know.

 

[J.G]

As has been pointed out before, Abilify has somewhat unusual pharmacodynamics in that it acts as a partial agonist of D2 receptors and it seems this is the case especially at lower dosages. This makes me wonder if the dosage could also be the key to avoid the loss of effect phenomenon.

This is correct. Abilify was originally developed to treat illnesses characterised by dopaminergic excess, such as schizophrenia. Standard doses of Abilify (15-30mg) block "dopamine receptors strongly enough to bat away the excess dopamine that causes psychosis". (See here.) The situation in MECFS is the opposite in that signs point to a continual dopamine shortfall due to impaired synthesis. We don't need to "bat away excess dopamine". Microdose Abilify may be enough to get the partial agonism we're after that helps normalise D2/D3 signalling.

I think it's natural for pwME to try and crank up the dosage when Abilify seems to work, hoping that more of it will lead to even bigger improvements. But dopaminergic dysregulation is just one aspect of ME pathophysiology, so I think the gains are capped. Stanford's conservative dosing regimen may be designed to prevent adaptive tolerance while staying in the / our (optimal?) partial agonism window.

 

[Butydoc]

No benefit other than achieving a lower steady state concentration of drug compared to 0.25 mg/day without reducing the dose anymore. 0.25mg is likely the smallest dropper dose that can be reliably measured.

So 0.25 mg/48 hrs will result in a lower steady state concentration compared to 0.25mg/24 hrs.

A tuberculin syringe that has 0.1 cc increments can easily be used for small increments. I started with 0.1cc and increased to 0.2cc without difficulty.

 

[leokitten]

A tuberculin syringe that has 0.1 cc increments can easily be used for small increments. I started with 0.1cc and increased to 0.2cc without difficulty.

Sorry, I should’ve stated with the dropper provided with the oral solution there are markers for each 1/4 ml but less than that might be difficult to get the same everyday.

 

[Martin aka paused||M.E.]

A paper by Bonilla on Abilify in ME
http://med.stanford.edu/content/dam...9TCviJmpUipnrTV-4mnd4n47s3Fc4etSj8bU9maWPvo3A

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. stick to that dosage for 10 days and judge it then.Let us know.

10 days on 2 mg ... no effect... getting worse

 

[hmnr asg]

10 days on 2 mg ... no effect... getting worse

So there is no second run on this drug? Or is your dude currently too small?
This is very discouraging since I quit just to start again also

 

[Martin aka paused||M.E.]

So there is no second run on this drug? Or is your dude currently too small?
This is very discouraging since I quit just to start again also

Im talking about pramipexole

 

[stefanosstef]

Im talking about pramipexole

So you take the whole 2mg at once at night for 10 days?You shouldnt split the dose.Does it at least help you sleep after you take it?What are the effects or side effects?

 

[Martin aka paused||M.E.]

So you take the whole 2mg at once at night for 10 days?You shouldnt split the dose.Does it at least help you sleep after you take it?What are the effects or side effects?

I fall asleep all day, no better sleep at night, no more energy...

 

[JAH]

A tuberculin syringe that has 0.1 cc increments can easily be used for small increments. I started with 0.1cc and increased to 0.2cc without difficulty.

You can also get 0.1 mg capsules from a compounding pharmacy.
my prescription is from the Stanford CFS clinic.

 

[hmnr asg]

You can also get 0.1 mg capsules from a compounding pharmacy.
my prescription is from the Stanford CFS clinic.

What dose did they recommend that you take? 0.1 mg/day?

 

[JAH]

What dose did they recommend that you take? 0.1 mg/day?

Yes

 

[hmnr asg]

Yes

And is such a low dose actually helping? how long have you been taking it? could you please share a bit of your experience with this dose of abilify?

Thank you!

 

[JAH]

And is such a low dose actually helping? how long have you been taking it? could you please share a bit of your experience with this dose of abilify?

Thank you!

I really don’t have much to offer- just been on the medication for a week.
Been poring over this thread, because I knew I had chance to try it and just wanted to chime in about the dosage, since there were some questions about that.

my case is severe, so it’s not easy for me to read or post. But when I can, I will update folks on how I’m doing, and thanks so much to everyone who has shared their experiences with Abilify. I’ve learned so much from you guys!

J