Abilify- Stanford Clinic Patients

[5vforest]

I personally would avoid centrally acting antihistamines such as doxepin, diphenhydramine, and other similar drugs, for example like hydroxyzine, when taking Abilify

Can you say more about why you would avoid diphenhydramine? I take it at bedtime for sleep and I have been a little worried. (I think I read a study about cumulative use being associated with dementia?) And now I'm on Abilify too, so if there's some additional contraindication there...

 

[leokitten]

Can you say more about why you would avoid diphenhydramine? I take it at bedtime for sleep and I have been a little worried. (I think I read a study about cumulative use being associated with dementia?) And now I'm on Abilify too, so if there's some additional contraindication there...

Because of exactly what you said, diphenhydramine is a pretty strong anticholinergic, with a cumulative dose risk of dementia especially as you get older. In addition, centrally acting H1 antihistamines reduce dopamine, serotonin and norepinephrine transmission so would counteract the hypothesized effects of Abilify on ME. I took diphenhydramine for a while years ago to help with ME sleep disturbances and found that the next day I was really groggy and even more fatigued from it. They last longer than only during the night.

 

[Boba]

Aripiprazole repurposed as an inhibitor of biofilm formation and sterol biosynthesis in multidrug-resistant Candida albicans

https://pubmed.ncbi.nlm.nih.gov/31173863/

Maybe it‘s all about Candida?

 

[Martin aka paused||M.E.]

Aripiprazole repurposed as an inhibitor of biofilm formation and sterol biosynthesis in multidrug-resistant Candida albicans

https://pubmed.ncbi.nlm.nih.gov/31173863/

Maybe it‘s all about Candida?

Fereshteh would have seen C. Albicans in her multi-omics study

 

[5vforest]

Because of exactly what you said, diphenhydramine is a pretty strong anticholinergic, with a cumulative dose risk of dementia especially as you get older. In addition, centrally acting H1 antihistamines reduce dopamine, serotonin and norepinephrine transmission so would counteract the hypothesized effects of Abilify on ME. I took diphenhydramine for a while years ago to help with ME sleep disturbances and found that the next day I was really groggy and even more fatigued from it. They last longer than only during the night.

Thanks, it's helpful to hear that coming from someone else. I will see about discontinuing. I don't feel any additionally grogginess but let's be honest, how would I really even know.

 

[leokitten]

Thanks, it's helpful to hear that coming from someone else. I will see about discontinuing. I don't feel any additionally grogginess but let's be honest, how would I really even know.

I believe one shouldn't take centrally acting H1 antihistamines on a consistent basis due to their anticholinergic properties, and if you do occasionally need to, switch to hydroxyzine as it has some of the lowest relative anticholinergic properties of the group.

I think occasional use of hydroxyzine in a sleep emergency is OK (like you had major disturbances for a while and lack of sleep due to ME and you really need to knock yourself out to get some sleep), because these drugs do work really well at counteracting ME sleep issues.

 

[mitoMAN]

I seem to tolerate Nimodipine in addition to Abilify well and get a lot of benefit on brainfog
Started with 7.5mg,
next day 2x 7.5mg,
then 3x7,5mg.
Four days later 15mg + 2x7,5mg
another day later 30mg + 2x 7.5mg
yesterday and today 30mg + 7.5mg + 15mg

Abilify seeme to have pooped out a bit, I am lowering the dosage from 2.5mg to 1.25mg for now and see if the benefits return or if my Abilify journey is over But again my Abilify effect was never as close as Martins. It was moderate but didnt get me off being bedbound.

I felt like increasing from 1.5mg to 2-3mg made me a bit more depressed plus lost some effect.
Maybe it was the dosage increase, maybe Abilify just lost its magic anyways. We will find out.

 

[leokitten]

Abilify seeme to have pooped out a bit, I am lowering the dosage from 2.5mg to 1.25mg for now and see if the benefits return or if my Abilify journey is over But again my Abilify effect was never as close as Martins. It was moderate but didnt get me off being bedbound.

How long did Abilify have a significant effect on you before pooping out?

 

[leokitten]

Abilify seeme to have pooped out a bit, I am lowering the dosage from 2.5mg to 1.25mg for now

When you started Abilify did you try to see if much lower dosages worked? I have this feeling that for some pwME, dosages >= 2 mg will become more antagonizing/blocking at dopamine and serotonin receptors and also speed up tolerance.

Abilify achieves quite high dopamine receptor occupancy throughout the brain even at lower dosages, with ~70% occupancy already at 2 mg, ~50% at 1 mg, and ~30% at 0.5 mg.

Abilify has very high affinity for D2/3 receptors, very long half-life, and slow dissociation from receptors, so I imagine with high fraction of receptor occupancy even as low as 2 mg it could be that in some people it becomes more dopamine blocking?

I wonder if you had stayed at something like 0.5-1 mg how things would’ve transpired.

 

[Martin aka paused||M.E.]

When you started Abilify did you try to see if much lower dosages worked? I have this feeling that for some pwME, dosages >= 2 mg will become more antagonizing/blocking at dopamine and serotonin receptors and also speed up tolerance.

Abilify achieves quite high dopamine receptor occupancy throughout the brain even at lower dosages, with ~70% occupancy already at 2 mg, ~50% at 1 mg, and ~30% at 0.5 mg.

Abilify has very high affinity for D2/3 receptors, very long half-life, and slow dissociation from receptors, so I imagine with high fraction of receptor occupancy even as low as 2 mg it could be that in some people it becomes more dopamine blocking?

I wonder if you had stayed at something like 0.5-1 mg how things would’ve transpired.

1 1/2 week, then I start again and look out for the 1mg max and see if it stops working again - if it works again

 

[Marylib]

Sorry to say but it's the truth, a doctor who is saying unsupported nonsense like this, not believing patients when they say a drug is clearly not working anymore, and pushing them to continue with treatment regardless should go under medical tribunal by the licensing board and their peers and deal with the consequences. I'm not saying their license should immediately be revoked, but they have to learn this is clearly borderline malpractice and they need to stop.

Yes, it's kinda creepy to say the least - from someone watching it all unfold. I'm not willing to go there unless I was totally med-free to judge what is happening. I dunno - whatever this disease is, it keeps trying to revert to 'barely alive.' That being said, I've had a pretty good couple of years so not willing to trade that in for an unknown. Quality of life is the main thing to me. If I could afford a naturopathic physician, like the kind they have in Oregon who are as fully qualifed as many GP's with certain special interests, I'd go for it. I'd also go for a villa by the sea and live happily ever after - for as long as that is.

 

[leokitten]

1 1/2 week, then I start again and look out for the 1mg max and see if it stops working again - if it works again

Sorry if I’m not understanding, you are coming off your hiatus of 6+ months in 1.5 weeks? Just out of curiosity, why wait any longer? The one very good anecdotal experience of Abilify cycling on PR from @JeannieBeanie in 2017 that I linked here showed it didn’t matter how long of a break you took after the threshold ~4-5 months, it didn’t help Abilify last longer for her at least.

Think about it this way, you were Abilify naive before the first time, and it lasted 4 months. So it will likely last 4 months again after taking a break of 4-5 months like @JeannieBeanie wrote. Maybe at lower dosage of <= 1 mg it will work longer, but don’t think will make much difference whether you waited 4-5 months or 8 months eg.

 

[Martin aka paused||M.E.]

Sorry if I’m not understanding, you are coming off your hiatus of 6+ months in 1.5 weeks?

I took five months …

 

[leokitten]

I took five months …

Best of luck @Martin aka paused||M.E. and @Push Fwd, I’m excited to hear back from you and hope it works again the same and for a much longer time. My spouse and I are very interested in your trial, will mean a lot for everyone if you can cycle!

 

[Martin aka paused||M.E.]

Best of luck @Martin aka paused||M.E. and @Push Fwd, I’m excited to hear back from you and hope it works again the same and for a much longer time. My spouse and I are very interested in your trial, will mean a lot for everyone if you can cycle!

Thank you so much, really appreciate it

 

[Martin aka paused||M.E.]

Lab results arrived. Catecholamines taken three weeks ago. 2. MU, not accurate but gives you an impression where you are. Dopamine is still high, DOPAC and VMA under the detection limit. Now I'm not sure if it's such a good idea to start with Abilify too soon. It has obviously left its marks.

 

[leokitten]

Lab results arrived. Catecholamines taken three weeks ago. 2. MU, not accurate but gives you an impression where you are. Dopamine is still high, DOPAC and VMA under the detection limit. Now I'm not sure if it's such a good idea to start with Abilify too soon. It has obviously left its marks.

Urine catecholamine tests do not correlate to brain free neurotransmitter levels.

The purpose of urine catecholamine testing is not to correlate with brain chemistry but to test for iatrogenic or neoplastic overproduction in the body. Trust me don’t waste your money or time.

 

[Martin aka paused||M.E.]

Urine catecholamine tests do not correlate to brain free neurotransmitter levels.

The purpose of urine catecholamine testing is not to correlate with brain chemistry but to test for iatrogenic or neoplastic overproduction in the body. Trust me don’t waste your money or time.

Fereshteh from Stanford proposed these tests.

 

[leokitten]

Fereshteh from Stanford proposed these tests.

Well then she doesn’t understand the limitations of these tests, their lack of evidence of correlation to brain free neurotransmitter levels in human subjects, and their sensitivity to issues with sampling methods, methodology, and issues even with what you did or ate during the day you did sampling.

There isn’t any research on humans showing any correlation between urine catecholamines and brain neurotransmitter levels. She should know this.

 

[Martin aka paused||M.E.]

Well then she doesn’t understand the limitations of these tests, their lack of evidence of correlation to brain free neurotransmitter levels in human subjects, and their sensitivity to issues with sampling methods, methodology, and issues even with what you did or ate during the day you did sampling.

There isn’t any research on humans showing any correlation between urine catecholamines and brain neurotransmitter levels. She should know this.

Concerning if true 😁