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Abilify- Stanford Clinic Patients

stefanosstef

Senior Member
Messages
528
Not experimenting will not improve treatment of this disease. On the contrary, it will improve understanding and treatments. Without people willing to take a calculated risk our understanding will never advance. Sad but true.

It's exactly like you say.Take abilify for example, it was first tested here in this forum by Hip, in 2012!8 years before Stanford.
That's where I found it and I was convinced that it had a good chance, that's why it was only 2nd in my priority list.I was quite confident about it, I remember this clearly, and I was going to take it.

On a similar thinking to Hip, I knew pramipexole is a quite effective treatment for anhedonia and since that symptom also manifests in me/cfs I thought it might have a common cause.I was proven right, for me at least.I won't be surprised at all if this drug also proves to be effective in the future (probably enhanced by some other antiinflammatory like LDN).
 

choochoo

Senior Member
Messages
130
I also agree that this medication could potentially be dangerous but this is the best thing in a long time to help a large number of patients. I think it’s worth a try and I think the risk is worth it !

We will find out soon enough when the people who have started their experiment with abilify report back after a few months. As for me I think I have been overdoing it and need to slow down. Definitely had a bad day and I’m sensing an impending crash.

The benefits may transpire slowly and in that case it is possible you can run ahead of them if you overdo it, and thereby promting another crash. I think this is what happened to me whilst taking valtrex.
 

choochoo

Senior Member
Messages
130
It's exactly like you say.Take abilify for example, it was first tested here in this forum by Hip, in 2012!8 years before Stanford.
That's where I found it and I was convinced that it had a good chance, that's why it was only 2nd in my priority list.I was quite confident about it, I remember this clearly, and I was going to take it.

On a similar thinking to Hip, I knew pramipexole is a quite effective treatment for anhedonia and since that symptom also manifests in me/cfs I thought it might have a common cause.I was proven right, for me at least.I won't be surprised at all if this drug also proves to be effective in the future (probably enhanced by some other antiinflammatory like LDN).


How long before you seen the effects of pramipexole? This is my fifth day. I am at 0.375 gram. No effect yet.
 

leokitten

Senior Member
Messages
1,541
Location
U.S.
How long before you seen the effects of pramipexole? This is my fifth day. I am at 0.375 gram. No effect yet.

Pramipexole and other dopamine agonists I tried years ago did nothing for me. I know this isn’t scientific but they just made me feel strange and did nothing for ME symptoms.
 

leokitten

Senior Member
Messages
1,541
Location
U.S.
I’m in agreement with those here who have repeated ad nauseum that taking Abilify 1-2 mg/day is going to greatly reduce risk of serious side effects compared to the standard antipsychotic dosage of 10-30 mg/day. It just is. All the serious side effects you read about are at the much higher dosage. While the risk isn’t zero at 1-2 mg/day it’s much, much smaller.
 

leokitten

Senior Member
Messages
1,541
Location
U.S.
May I ask what dose and how often for etoricoxib? Have you suffered any gastro problems?

Etoricoxib is going to have far lower risk of gastro side effects compared to celecoxib, as etoricoxib has over 100x selectivity of COX-2 vs COX-1 while celecoxib has 10-20x.
 

Badpack

Senior Member
Messages
382
Everyone who wants to try it out, fine. Best of luck to you in your adventure to get us all out of this misery.

Others may stay back and watch. Which is also perfectly fine. I read both stories by now. The very good reactions at the start and also the heavy backbreaking crashes about 2-3 months in. So we will see where it leads from here. Just be nice to each other, we all just want to get better.
 
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leokitten

Senior Member
Messages
1,541
Location
U.S.
I’m not taking Abilify I haven’t decided yet. So I’m not on any side. I’m just on the side of objectivity.
 
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leokitten

Senior Member
Messages
1,541
Location
U.S.
Pramipexole is a bit different from Abilify, such as it has no known effect on ht-7 receptors.

Yes totally. Dopamine full/partial agonists typically only act on D2, D3, and D4 receptors and are meant for Parkinson’s (in conjunction with levodopa) and restless leg syndrome. Abilify has a more complex mode of action across multiple receptor types and transporters.
 

stefanosstef

Senior Member
Messages
528
Pramipexole and other dopamine agonists I tried years ago did nothing for me. I know this isn’t scientific but they just made me feel strange and did nothing for ME symptoms.

Do you remember for how long and at what dosage?

Yes totally. Dopamine full/partial agonists typically only act on D2, D3, and D4 receptors and are meant for Parkinson’s (in conjunction with levodopa) and restless leg syndrome. Abilify has a more complex mode of action across multiple receptor types and transporters.

It's probably that dopamine agonism though that helps reduce the neuroinflammation.
 

leokitten

Senior Member
Messages
1,541
Location
U.S.
Do you remember for how long and at what dosage?

It's probably that dopamine agonism though that helps reduce the neuroinflammation.

I cannot remember the dosage as I tried it in 2014. But I do know that I took it for 1-2 months as I always try this long with most protocols.

I just felt like it didn’t do anything, as if I didn’t have low dopamine so it didn’t add anything because dopamine and it are competing with each other at the receptor sites so if you don’t have low dopamine it’s not going to help. Remember these agonists don’t work or feel like stimulants.

It certainly didn’t help with my ME symptoms at all, but my one caveat was that I was working pretty much full-time with telework half the week and I was constantly forced to physically and mentally overexert, get PEM, and crash. For the first years my crashes didn’t last more than a couple days so I could manage crashing once or twice a week.

So the intense overexertion might’ve muddied the waters who knows. But certainly the pramipexole did not give me any more energy. Why not try Ritalin or other stimulant?
 

leokitten

Senior Member
Messages
1,541
Location
U.S.
One significant positive thing about pramipexole (and I believe also with ropinirole) is that there’s significant scientific evidence that it exhibits strong mitochondrial protective effects in the brain.

But that being said, there is zero evidence that there is anything inherently dysfunctional with mitochondria in ME, in fact I believe all the researchers who’ve looked for it found that our mitochondria are normal and that something upstream is causing the metabolic dysfunction in the TCA cycle (repeating here what others have said in this thread).
 

choochoo

Senior Member
Messages
130
If it good enough for Ron Davis to contemplate conducting a clinical trial with similar then I think the use of low dose antipsycotics needs further investigation.

The potential for things to go wrong with these drugs is always at the back of ones mind. We are trying to shed light on a interesting aspect of ME/CFS. That is over 80% of patients improve. I've had this condition for 40 years and I've never heard or seen anything so effective ( even if its temporary ).

If it wasn't for people willing to push the boundaries of science the majority would still be thinking the world is flat.
 
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stefanosstef

Senior Member
Messages
528
One significant positive thing about pramipexole (and I believe also with ropinirole) is that there’s significant scientific evidence that it exhibits strong mitochondrial protective effects in the brain.

But that being said, there is zero evidence that there is anything inherently dysfunctional with mitochondria in ME, in fact I believe all the researchers who’ve looked for it found that our mitochondria are normal and that something upstream is causing the metabolic dysfunction in the TCA cycle (repeating here what others have said in this thread).

I was asking because it's crucial that you do the proper protocol (Fawcett's protocol) because parkinson's AND RLS protocols are very different.Jt's low doses compare to that and split during the day.For neuroinflammation it requires, say, 2mg once at night.

And LDN is a very important addon to this even though alone it does very very little.

Also yes, pramipexole is neuroprotective and I totally feel that.Before I had a constant feeling that my brain had a 24/7 minor storm that was very slowly and steadily causing damage.Now I feel it light and clear as a sunny day.
 

hmnr asg

Senior Member
Messages
556
What is happening to this thread :nervous:
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bread.

Senior Member
Messages
499
Please take into account that the low dose regimen discussed here effectively change antipsychotics into totally different drugs. Furthermore it is looking more and more likely that the problems seen in mitochondria are a result of activity upstream and maybe be a result of something far more disease defining i.e. a chemical imbalance ( which seems highly probable ).

I would be extremely interested in what makes this seems highly probable, would you mind sharing?