Abilify tolerance

nsdn

Senior Member
Messages
184
But what is the reason for taking both? If Amisulpride doesn't do anything for you, isn't it better to just take Abilify?
Simply because there is a possibility that it may help Abilify not to stop working. The 60 ml bottle of Solian will last me 600 days, less than 20 euros. NO ONE here has certainties and many have disappointments with Abilify so I feel comfortable trying something different.
 
Messages
48
Simply because there is a possibility that it may help Abilify not to stop working. The 60 ml bottle of Solian will last me 600 days, less than 20 euros. NO ONE here has certainties and many have disappointments with Abilify so I feel comfortable trying something different.
Okay, I was just wondering about possible side effects & risks if you combine both without a reason. But I understand your fear and it will be interesting if this plan works for you. Would be nice if you could keep us updated. 😊
 

nsdn

Senior Member
Messages
184
Hello again.

Amisulpride (Solian) didn't improve anything in me, maybe some mood. The problem is that in a month and a half I gained 7 kilos. Then I stopped it and making only one meal a day keto + meat broths I have already lost 5 kilos. I continue with Abilify 0,4mg since the end of May and with the incredible improvements.

After I lose some more weight and get some tests done I will let you know if my hormones and other things are ok.

My treatment:

Mornings.
0.4mg. Abilify
Every other day CN BASE on some days and chelated copper and folic acid with B12 on others.
AAKG 2000
Mestinon
Maca

Afternoons.
Milk Thistle Complex
Mestinon
Rhodiola
Vitamin D
Ginkgo
NAC
Vitamin C
Homemade capsule of Cistus Incanus and another one of Stevia
ALA

Before sleeping.
LDN 3.5 mg.
 

pattismith

Senior Member
Messages
3,988
Low-dose Abilify would appear to have two mechanisms which increase the dopamine response: it's direct agonism of the dopamine D2 and D3 receptors, as well as the antagonism of 5-HT1A, which indirectly raises dopamine in the medial prefrontal cortex, striatum, and hippocampus, according to Wikipedia.

The recent paper from Stanford does not mention 5-HT1A, but focuses on the dopamine D2 receptor which Abilify targets. The paper points out the fact that D2 modulates neuroinflammation and microglial activation.

Aripiprazole is combined with duloxetine in some case studies with success.


Duloxetine inhibits serotonin and norepinephrine reuptake, thus combining two therapeutic mechanisms in one agent to treat depression and anxiety. As well, duloxetine enhances dopamine levels within the prefrontal cortex. The mechanism of action behind the increase in dopamine levels involves the inhibition of norepinephrine transporters. These transporters have a significant affinity for dopamine, resulting in the transporter’s ability to act on both dopamine and norepinephrine. Therefore, inhibition of norepinephrine transporters can lead to an increase in dopamine. This increase in dopamine specifically occurs in the prefrontal cortex, where dopamine transporters are scarce, and reuptake relies more heavily on norepinephrine transporters.[3]

Duloxetine works to treat various neuropathic and chronic pain states by increasing the activity of noradrenergic and serotonergic neurons in the descending spinal pathway on the dorsal horn. These descending neurons inhibit the activity of dorsal horn neurons, suppressing excessive input from reaching the brain. The hypothesis is that a deficiency in these inhibitory signals results in excess input reaching the brain, which gets perceived as pain.[4]
https://europepmc.org/article/NBK/nbk549806#article-20751.r4

Duloxetine - Abstract - Europe PMC
 

GlassCannonLife

Senior Member
Messages
819
Hello again.

Amisulpride (Solian) didn't improve anything in me, maybe some mood. The problem is that in a month and a half I gained 7 kilos. Then I stopped it and making only one meal a day keto + meat broths I have already lost 5 kilos. I continue with Abilify 0,4mg since the end of May and with the incredible improvements.

After I lose some more weight and get some tests done I will let you know if my hormones and other things are ok.

My treatment:

Mornings.
0.4mg. Abilify
Every other day CN BASE on some days and chelated copper and folic acid with B12 on others.
AAKG 2000
Mestinon
Maca

Afternoons.
Milk Thistle Complex
Mestinon
Rhodiola
Vitamin D
Ginkgo
NAC
Vitamin C
Homemade capsule of Cistus Incanus and another one of Stevia
ALA

Before sleeping.
LDN 3.5 mg.

What improvements did you get from the Abilify? Did you mention somewhere how you were before and after (functional scale or something similar)? Thanks
 

GlassCannonLife

Senior Member
Messages
819
I wouldn't say normal because I didn't want to push myself too much but vastly improved. I went from not even being able to shower to doing weight training. But it just lasted two months and then it quickly stopped working.

Wow, that's so amazing. I hope you don't mind me asking a number of questions, I'm looking into trying it in a few months.

Here are the questions:

What happened around the time it stopped working? Did you notice any crash, did you have a particular exertion, etc.?

How quickly did you get to your peak dosage, what dosages did you go with (eg 2 weeks 0.25 mg, 2 weeks 0.5, etc).

How quickly did you increase your exertion when you noticed benefits?

Are you back to the exactly same baseline (ie housebound/mostly bedbound?)? I'm not exactly sure what your level of function was as you said housebound but then you said unable to shower, which makes me think more on the bedbound level. Do you maybe have an estimate number based on the CFIDS Scale? Eg 10? 20?

Thank you!
 

hmnr asg

Senior Member
Messages
571
What happened around the time it stopped working? Did you notice any crash, did you have a particular exertion, etc.?
I did not crash, it just fizzled out. Within the span of a week i started to regress to baseline.

How quickly did you get to your peak dosage, what dosages did you go with (eg 2 weeks 0.25 mg, 2 weeks 0.5, etc).
I just started at 1mg. No ramp up. I took two breaks from it after it stopped working to see if i can get it to work again. First break was three months and the next one was six months. The next two times I tried different doses. The last one I ramped up very slowly (used the liquid format and started at 0.1mg). But it just never worked again.

How quickly did you increase your exertion when you noticed benefits?
Slowly.

Are you back to the exactly same baseline (ie housebound/mostly bedbound?)? I'm not exactly sure what your level of function was as you said housebound but then you said unable to shower, which makes me think more on the bedbound level. Do you maybe have an estimate number based on the CFIDS Scale? Eg 10? 20?
I am back to baseline. I can shower with a shower chair once in two weeks. I really dont know where I stand in terms of moderate-severe. I'm not as bad as Whitney Dafoe but im worse than most moderates. But after quitting abilify and my subsequent unsuccessful attempts at getting it to work again I am back to the hell I was before.
Sorry I dont have an estimate of my CFID.

I highly recommend the facebook group on low dose abilify for ME/CFS. There is a ton of information there.
My feeling (completely subjective) is that you can break down the people and the response to abilify to the following groups:

Group 1: respond well but it stops working after a few months (most of the patients, lets say 50% of the population)
Group 2: respond and keep getting better (10%)
Group 3: dont respond (maybe 30%)
Group 4: get actually worse (maybe 10%)

Of course getting these numbers right requires a proper study a monitoring patients over the long run which nobody is interested in doing. I have spend significant time on that FB group and the CFS subreddit and this is just my feeling.

Also, people who stop responding can also be broken down into two groups. Those who can never recreate the initial benefits (like me) regardless of playing with the dose or taking a long break, and those who can.
In addition, the termination of benefits isnt really a crash. I know that seems like a simple hypothesis : you got better and you pushed yourself and you crashed. That is not it. It's something else (somewhat like antidepressants and how they stop working sometimes). Some sort of regression to baseline.
 
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hmnr asg

Senior Member
Messages
571
@GlassCannonLife
I also like to add that in the 12 years that I have been sick I tried so many supplements and drugs. The only intervention that seemed to address the core of my symptoms was abilify. I really hope some research lab follows the thread of abilify. I truly believe its the only real starting point we have to understanding CFS and a potential cure. While abilify is no cure, it actually touched something fundamental in this disease that is otherwise unmoved by anything else (in my opinion).
 

GlassCannonLife

Senior Member
Messages
819
I did not crash, it just fizzled out. Within the span of a week i started to regress to baseline.


I just started at 1mg. No ramp up. I took two breaks from it after it stopped working to see if i can get it to work again. First break was three months and the next one was six months. The next two times I tried different doses. The last one I ramped up very slowly (used the liquid format and started at 0.1mg). But it just never worked again.


Slowly.


I am back to baseline. I can shower with a shower chair once in two weeks. I really dont know where I stand in terms of moderate-severe. I'm not as bad as Whitney Dafoe but im worse than most moderates. But after quitting abilify and my subsequent unsuccessful attempts at getting it to work again I am back to the hell I was before.
Sorry I dont have an estimate of my CFID.

I highly recommend the facebook group on low dose abilify for ME/CFS. There is a ton of information there.
My feeling (completely subjective) is that you can break down the people and the response to abilify to the following groups:

Group1: respond well but it stops working after a few months (most of the patients, lets say 50% of the population)
Group 1: respond and keep getting better (10%)
Group 2: dont respond (maybe 30%)
Group 3: get actually worse (maybe 10%)

Of course getting these numbers right requires a proper study a monitoring patients over the long run which nobody is interested in doing. I have spend significant time on that FB group and the CFS subreddit and this is just my feeling.

Also, people who stop responding can also be broken down into two groups. Those who can never recreate the initial benefits (like me) regardless of playing with the dose or taking a long break, and those who can.
In addition, the termination of benefits isnt really a crash. I know that seems like a simple hypothesis : you got better and you pushed yourself and you crashed. That is not it. It's something else (somewhat like antidepressants and how they stop working sometimes). Some sort of regression to baseline.

Thank you that's very helpful! I think you're right about the groups from what I've heard. I wonder if the people that lose the effect have underlying infections or some dysfunctions that start to spiral out of control and the body shuts itself down to where it feels "safe".

How soon after you started taking it did you notice the benefits?


I personally use the scale where being fully bedbound is "very severe" (0-10 on the scale, Whitney being in the low single digits) while being housebound is "severe" (15-30 ish on the scale). Judging from what you said it sounds like you're around a 10 or so, maybe severe-very severe.

I wish all of these groups would be somewhere else instead of on Facebook.. I stopped using it years ago. I also don't understand why people prefer discussing these things in a non-anonymous context! It is probably just the ease of use for most people or something though.
 

hmnr asg

Senior Member
Messages
571
Thank you that's very helpful! I think you're right about the groups from what I've heard. I wonder if the people that lose the effect have underlying infections or some dysfunctions that start to spiral out of control and the body shuts itself down to where it feels "safe".

How soon after you started taking it did you notice the benefits?


I personally use the scale where being fully bedbound is "very severe" (0-10 on the scale, Whitney being in the low single digits) while being housebound is "severe" (15-30 ish on the scale). Judging from what you said it sounds like you're around a 10 or so, maybe severe-very severe.

I wish all of these groups would be somewhere else instead of on Facebook.. I stopped using it years ago. I also don't understand why people prefer discussing these things in a non-anonymous context! It is probably just the ease of use for most people or something though.
I agree, I personally dislike facebook and only kept it so far for that group. I want to delete it very much.
The first 10 days I felt no difference, maybe a bit agitated and a bit more tired. After that it was just getting better every day. I even bought 45lb dumbbells and was slowly ramping up my use of them. No PEM.
They sit there now collecting dust and remind me of the tiny glimmer of hope that came into my life quickly and faded just as quickly as it had arrived.
 

GlassCannonLife

Senior Member
Messages
819
I agree, I personally dislike facebook and only kept it so far for that group. I want to delete it very much.
The first 10 days I felt no difference, maybe a bit agitated and a bit more tired. After that it was just getting better every day. I even bought 45lb dumbbells and was slowly ramping up my use of them. No PEM.
They sit there now collecting dust and remind me of the tiny glimmer of hope that came into my life quickly and faded just as quickly as it had arrived.

Nice, that's crazy.

These tolerance stories are so scary though, I think I'll just try and do the same as I do now for the first few weeks just in case activity ruins it somehow.. Maybe I'd increase to very careful trips out of the house for a few weeks after.

It's easy to plan all that though and much harder when the symptoms go away I imagine! I already struggle pacing perfectly while crippled, I can't imagine the temptation when you're feeling so good.
 

lenora

Senior Member
Messages
5,016
Hmmm....Interesting reading. It seems that low dose abilify, perhaps used a few times/wk. may be the best route to go. We're all so different in our reactions to meds...what works for one person; doesn't for another. The same with vitamins, etc.

I'm going to ask my neurologist about a trial on it and will let you know how I do. I'm probably moderate on the scale, have been bedbound at times, but have had one truly pain free and symptom free day in about 35-40 years. I would like to try abilify only b/c so much has been written about it. I'm just worried about even more interference with sleep.

Thanks for your input....it all helps. Wishing everyone a better 2022 (health wise). Yours, Lenora.
 

pattismith

Senior Member
Messages
3,988
This Doctor proposes three drugs for Post Covid Chronique Fatigue Syndrome:

Methylphenidate, Duloxetine, Brexpiprazole.

Repurposing Drugs for Post–COVID-19 Fatigue Syndrome: Methyl... : American Journal of Therapeutics (lww.com)

I already took Methylphenidate + Duloxetine and it was fine for muscle tone/energy/exercice tolerance, but Duloxetine lowered too much my motivation so I had to stop it.

Brexpiprazole is a drug very similar to Aripiprazole, but with some differences that you can find in Wikipedia

Brexpiprazole - Wikipedia

...
 

Ladycreole03

Senior Member
Messages
147
This Doctor proposes three drugs for Post Covid Chronique Fatigue Syndrome:

Methylphenidate, Duloxetine, Brexpiprazole.

Repurposing Drugs for Post–COVID-19 Fatigue Syndrome: Methyl... : American Journal of Therapeutics (lww.com)

I already took Methylphenidate + Duloxetine and it was fine for muscle tone/energy/exercice tolerance, but Duloxetine lowered too much my motivation so I had to stop it.

Brexpiprazole is a drug very similar to Aripiprazole, but with some differences that you can find in Wikipedia

Brexpiprazole - Wikipedia

...
Interesting! What dosage did you have to start with?
 
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