Abilify- Stanford Clinic Patients

[sugamama]

Interesting. For years now I've used very low doses of a similar drug called amisulpride, which I found had a number of benefits for ME/CFS and other symptoms. I also tried very low dose Abilify, and found its effects similar to amisulpride (though Abilify I found slightly overstimulating, so switched back to amisulpride).

These two drugs are similar in that they both work on the dopamine autoreceptors rather than the dopamine receptors.

I started a thread about very low dose amisulpride here.

Hip would it be silly to mix something like 1mg abilify and 12.5mg amisulpride for extra effect?

 

[hmnr asg]

@hmnr asg, @CactusJilly

WAAAAAAY TOO FAST!!! 5 years may seem extreme and you may not need that long, byt 3 or 6 months is going to cause you more pain than I think you need or want. And it's almost inevitable that a fast cut will put you back on Cymbalta bfore you can say "What the fff..... !!!"


Believe me, I do. Take it very, very, VERY low and slow in terms of cuts and just know that it WILL get better.

Hmm, so remember how i said i was going to get off cymbalta in 3-6 months? well thats not going to happen. Getting right back on it. I went all the way down to 5mg and then stopped and then had something close to a nervous breakdown. I dont mention the details. But im back on this damn pill and wont be trying to get off for a loong time.

 

[YippeeKi YOW !!]

@hmnr asg

But im back on this damn pill and wont be trying to get off for a loong time.

Oh, hmnr, I'm soooooo sorry. DOn;t let this nasty backlash discourage you entirely. Try to find a taper Dr (it's a specialty and requires special licensing, not to mention enormous amounts of patience and empathy,(something Drs aren't noted for, generally, so there aren't many of 'em) and have him/her transfer you to diazapam, then slooooooowly taper down over a period of, possibly, years. It's worth the time, effort and expense.

Please be of good cheer. Almost everyone who tries to taper off this shite goes thru the same thing you are, and almost all of them succeed in finally gettig off the looooong way.

Sending you empathetic, supportive 's and sympathy .

 

[bread.]

Anyone tried it? I hear that Stanford tries it on some severe me/cfs patients?

 

[RL_sparky]

Dr. Bonilla at Stanford writes prescriptions for pretty much all his patients whether severe or not.
Dr. Montoya told me to keep away from it while he was still working at Stanford. Personally I have a problem
with using antipsychotic drugs on the patients without an approved trial. Seems to help a subset of patients though. We so desperately need biomarkers and better understanding of subsets..

 

[bread.]

Dr. Bonilla at Stanford writes prescriptions for pretty much all his patients whether severe or not.
Dr. Montoya told me to keep away from it while he was still working at Stanford. Personally I have a problem
with using antipsychotic drugs on the patients without an approved trial. Seems to help a subset of patients though. We so desperately need biomarkers and better understanding of subsets..

That is interesting, thank you.

I do get your point, It could act as an anti-inflammatory though, I mean why are patients getting better?

It would also help if Dr. Bonilla would throw out some numbers (what % gets better) even though it is not formally studied yet.

I am not sure all patients can wait for studies (that will never be financed).

PS: Your quotation of Dr. Fluge is very interesting, I would think the same as he does, do you know when he said that?

 

[RL_sparky]

Dr. Bonilla throws out all kind of numbers of effectiveness. One patient reported he said 80% have a positive effect. Privately patients reports don't back those numbers up. The drug is is controversial even within the Stanford patient community.

I see your point on costs and time to have a trial on Abilify. We all have personal risk levels on what to try.
If you choose to try it I hope it gives you much needed relief.

The Dr. Fluge quote is a few years old. I can't remember when he said it. I think it was in regards to a metabolic paper they did.

 

[percyval577]

Don´t try an antipsychotic, would be my advise from my experience.

Never ever, there should be reasons too, the DA system is very tiny and very important,
ppl can get severe side-effects, and they even can come to the daylight when the treatment already has stopped long time ago.

I personally tried an antipsychotic for one single time, and it was the worst decision I ever did.

To be "fair", I got quite a lot of insight out of it in terms how to treat my illness, this having said,
I found a way to reverse the medical impact, it´s still on its way, together with other mecfs nonsense.

I don´t know about Abilify in particular, I think it´s thought here to work against inflammation.
However, dangerous stuff, doctors in USA and Belgium, I think, have been sentenced.
In my opinion, these medicals should be absolutely restricted, qualitatively and maybe even quantitatively.
They are a "living death", really.

 

[keepontruckin]

It has helped with some exceptional pain cases i see.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3184588/

 

[Learner1]

Abilify can deplete B1, B2, folate, B12, calcium, K, melatonin, carnitine, CoQ10, etc.

https://www.optimallivingdynamics.c...diazepines-induced-guide-vitamins-medications

Many of these are needed to support mitochondrial function, especially B2, carnitine and CoQ10.

I see a top specialist (not at Stanford) and I have never heard of him prescribing Abilify. I also know patients who used to see Bonilla who found him to be very limited in his approach, and not adequately testing to identify underlying problems and using a wide variety of treatments that many of us have benefited from to address them.

In my mind, Abilify is a sledgehammer that's not specidic, can cause damage, and has withdrawal problems.

Curcumin and boswellia are excellent for reducing brain inflammation - I use both to reduce CNS swelling side effects of my IVIG treatment.

 

[stefanosstef]

I believe the dangers for low dose abilify in non schizophrenic patients are overexaggerated.Schizophrenics have already a genetically different dopamine system, already upregulated.I dont believe there is one study that shows permanent sensitization or upregulation of dopamine receptors in "healthy" subjects.

Edit:I was wrong.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3574463/

 

[pibee]

I
Agreed. If neuroinflammatuon is indeed the issue, why not try attacking it with somerhing more benign?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3309643/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4888275/

https://www.spandidos-publications.com/10.3892/ijmm.2017.3217

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845393/

I have taken both of these for over a year for neuroinflammatuon caused by my IVIG treatment. They are quite effective in reasonable doses.

ugh, you got neuroinflammation from IVIG? What is the explanation for it by you or your doctor? MCAS?
how wonderful.
Seems IVIG can swing both ways, annoying!

 

[Martin aka paused||M.E.]

Abilify can deplete B1, B2, folate, B12, calcium, K, melatonin, carnitine, CoQ10, etc.

https://www.optimallivingdynamics.c...diazepines-induced-guide-vitamins-medications

Many of these are needed to support mitochondrial function, especially B2, carnitine and CoQ10.

I see a top specialist (not at Stanford) and I have never heard of him prescribing Abilify. I also know patients who used to see Bonilla who found him to be very limited in his approach, and not adequately testing to identify underlying problems and using a wide variety of treatments that many of us have benefited from to address them.

In my mind, Abilify is a sledgehammer that's not specidic, can cause damage, and has withdrawal problems.

Curcumin and boswellia are excellent for reducing brain inflammation - I use both to reduce CNS swelling side effects of my IVIG treatment.

Abilify got me from very severe to moderate in 2 months ...

 

[stefanosstef]

Curcumin and boswellia are excellent for reducing brain inflammation - I use both to reduce CNS swelling side effects of my IVIG treatment.

Longvida does very little for the PEM induced neuroinflammation.I don't know if everyday consumption would protect.
What works for me is Ibudilast.10-20mg (20mg can cause nausea) gives me significant reduction after 2-3 hours.

 

[valentinelynx]

My doctor suggested Boswellia to combat the CNS swelling from my IVIG treatments

Now that's interesting to me! I often get severe headache and back pain that is meningitis-like on the 3rd day after my IVIG infusion. I have used Boswellia in the past, but not since being on IVIG. Thanks for the tip!

 

[Jessie 107]

Since starting on Abilify I have been able to,
Have a bath
Get downstairs
Talk more
Watch TV
Spend more time online
This would have been impossible before, as I have been fully bedbound for two and a half years.
No supplement has given me this much energy and function.

 

[bread.]

Since starting on Abilify I have been able to,
Have a bath
Get downstairs
Talk more
Watch TV
Spend more time online
This would have been impossible before, as I have been fully bedbound for two and a half years.
No supplement has given me this much energy and function.

what kind of onset did you have? sudden or more like continous? what dosage are you on? how old are you? ty!

 

[bread.]

Longvida does very little for the PEM induced neuroinflammation.I don't know if everyday consumption would protect.
What works for me is Ibudilast.10-20mg (20mg can cause nausea) gives me significant reduction after 2-3 hours.

where did you get ibudilast?

 

[Jessie 107]

what kind of onset did you have? sudden or more like continous? what dosage are you on? how old are you? ty!

My onset was a gradual one
I am taking 2.5 mg
I am 54

 

[bread.]

My onset was a gradual one
I am taking 2.5 mg
I am 54

thank you!

do you have eds like features?
small fiber neuropathy?
pots?
muscle paun, weakness and muscle wasting?

I am very severe and trying to find out if we have a similar case maybe.