Abilify- Stanford Clinic Patients

[leokitten]

@leokitten

Thank you very much for your effort to help me!

Sadly, desvenlafaxine is not available in Switzerland...
I will read some reviews of the drugs you listed and than discuss it with my phycisian when I found my favourite.

Thanks.

No problem, I’m sure you are already doing this but tell he/she these specific symptoms and how they are triggered. There could also be other classes of drugs that can help, just antidepressants is one class that I know of.

 

[YippeeKi YOW !!]

I wrote that pretty much all psychotropic drugs cause profound changes and difficult to get off of when taken for long enough time at higher than minimal dosages.

And I wrote that, no, many of them can work their particular magic at very low doses over short periods of time .... the opposite of " ... when taken for long enough time at higher than minimal dosages ...."

I'd go back and dig out my quote, along with yours, but am spiking badly right now and am heading off for a lie down.

 

[J.G]

Perhaps abilify doesnt give us more energy, maybe it just makes us feel less yucky, and we interpret that as having more energy and we end up doing more naturally and that leads us to crash since it never gave us extra energy. It just masked the feedback effect of ME.

I've been thinking about this. Abilify acts on various subclasses of serotonin and dopamin receptors with differential effects on a per-receptor basis (agonism, antagonism, or partial agonism). You can see Abilify's pharmacodynamic profile on Wikipedia here (as aripiprazole) under binding profile.

The question is whether the neurotransmitter dysregulation that Abilify counteracts is directly responsible for (some of) ME pathology. I think it is, not least because it sits immediately downstream of the IDO metabolic trap. If my understanding of what Dr. Phair has written about the metabolic trap theory on these forums is correct, then dopamine synthesis is impaired in "trapped" cells while serotonin runs high. Serotonin and dopamine have countless regulatory roles in the body both centrally (in the brain) and peripherally. Who knows what the causal chain is to the pyruvate dehydrogenase complex inhibition that Fluge & Mella found, but it's not a stretch to think that it lies downstream of neurotransmitter imbalance. If that is indeed the case, and Abilify helps correct it, then it's not "false energy" that Abilify provides. To the extent that Abilify becomes less effective over time, adaptive tolerance might be to blame via, for instance, changes in receptor count. Just my thoughts.

I will be trying Abilify if I'm able to source it.

 

[leokitten]

I will be trying Abilify if I'm able to source it

The following are my opinions based on what I’ve read, take it or leave it it’s ok!

One crucial piece of advice: however possible, no matter how much more energy or exertion capacity Abilify might give you or make you feel, DO NOT start overexerting, getting PEM, or crashing. If you are getting PEM often on treatment or even worse are crashing, then definitely you are doing it wrong, and this is the case with any empirical ME treatment not just Abilify.

There are testimonials that to me suggest that overexerting might, though not for certain, but might be a significant factor for it losing its efficacy in some people. It seems to make symptoms really melt away at first but in reality it’s probably only going to give you maybe 20% improvement.

I believe one should use the oral solution (not the pills) and stick to the lowest dose possible (like even 0.25 mg/day) that results in improvements for a long time, even if you feel those improvements plateau but not get worse at that dose, as this might help a lot with preventing overexertion.

I believe it’s also just as important to only very slowly increase exertion in baby steps over many months. Just be happy it makes you feel less like shit and improves many symptoms but not demand much increased exertion capacity for a long time.

From personal experience, and I feel this way about any current empirical ME treatment, if you are in a place in life where you want substantial improvements fairly quickly then treatments will fail. You need to be at a place where you are very patient, are in no rush to get major exertion improvements, and are willing to go very slowly and take years if needed to give your body or the treatment time to make gains stick long term.

It could be that doing all this above won’t make a difference in Abilify losing its efficacy after a few months in some people, but I believe there are enough testimonials across all ME treatments that not doing this will more than likely cause treatment to fail.

Also read through this thread regarding combining Abilify with COX-2 inhibitors and LDN.

 

[J.G]

I appreciate the words of warning. Abilify has been on my radar for some time now; I'm aware of the mixed testimonials, and I will not be taking it without the supervision of a medical professional. I'm also not looking to encourage (nor discourage, for that matter) anyone from trialling Abilify. I'm investigating the drug and its relationship to the metabolic trap theory as best I can to form a personal picture of what Abilify might do, and what the risk-reward ratio might be. Start low and go slow is the advice for pwME, with anything and always.

 

[Martin aka paused||M.E.]

There are testimonials that to me suggest that overexerting might, though not for certain, but might be a significant factor for it losing its efficacy in some people.

I don’t think so. I think it stops working first. You don’t notice it because you’re better. But as soon as you crash you notice that Abilify does not make things better (reduce PEM) anymore.
But not to overdo is still right for ppl who take Abilify

 

[leokitten]

I don’t think so. I think it stops working first. You don’t notice it because you’re better. But as soon as you crash you notice that Abilify does not make things better (reduce PEM) anymore.
But not to overdo is still right for ppl who take Abilify

I believe said in at least a couple of your videos (and maybe also comments) on your Instagram that you still crash on Abilify, and these videos were dated long before the final crash you had recently where you didn’t recover anymore.

I remember too you said in at least one video that you crash but the recovery is much faster with Abilify. So to me all this info is indicative of crashing multiple times while on treatment. Maybe these didn’t feel like a full crash like the last one, but you were fairly direct that you were still crashing from overexertion on treatment.

So I’m just wondering if that is the case maybe that’s why it stopped working before the final crash? Or are you saying that in 3 months or more of treatment you only crashed once and it was this last time? Also, how often did you get PEM but not crash during the treatment period?

I’m asking these questions only to understand better what might cause it to stop working, not at all to doubt or challenge you , I just want to understand better because I have a bottle of Abilify now but really want to know how best to proceed before starting.

 

[Martin aka paused||M.E.]

I believe said in at least a couple of your videos (and maybe also comments) on your Instagram that you still crash on Abilify, and these videos were dated long before the final crash you had recently where you didn’t recover anymore.

I remember you too you said in at least one video that you crash but the recovery is much faster with Abilify. So to me all this info is indicative of crashing multiple times while on treatment. Maybe these didn’t feel like a full crash like the last one, but you were fairly direct that you were still crashing from overexertion on treatment.

So I’m just wondering if that is the case maybe that’s why it stopped working before the final crash? Or are you saying that in 3 months or more of treatment you only crashed once and it was this last time? Also, how often did you get PEM but not crash during the treatment period?

I’m asking these questions only to understand better what might cause it to stop working, not at all to doubt or challenge you , I just want to understand better because I have a bottle of Abilify now but really want to know how best to proceed before starting.

I only crashed in the beginning. Please look at the date of the videos. This was when I really overdid things with exercises...
In the last couple of weeks I did not crash. I crashed only one time with real PEM and that was the date we are talking about.
Abilify has a lasting effect. Before I started it, I couldn’t eat, I couldn’t talk without Ativan. Now that’s still possible, while I’m not taking Abilify. This is why I think I did not notice it stopped working until I crashed two weeks ago. And now I’m permanently worse.
We will see if it starts working again after a few weeks

 

[leokitten]

I only crashed in the beginning. Please look at the date of the videos. This was when I really overdid things with exercises...
In the last couple of weeks I did not crash. I crashed only one time with real PEM and that was the date we are talking about.
Abilify has a lasting effect. Before I started it, I couldn’t eat, I couldn’t talk without Ativan. Now that’s still possible, while I’m not taking Abilify. This is why I think I did not notice it stopped working until I crashed two weeks ago. And now I’m permanently worse.
We will see if it starts working again after a few weeks

Ok thanks very much for the info.

 

[leokitten]

Abilify has a lasting effect. Before I started it, I couldn’t eat, I couldn’t talk without Ativan. Now that’s still possible, while I’m not taking Abilify. This is why I think I did not notice it stopped working until I crashed two weeks ago. And now I’m permanently worse.
We will see if it starts working again after a few weeks

This is really interesting. How long has it been since your last dose? I’m wondering if this is happening because of the very long half-life of the drug and that you still have some in circulation, or if it’s really causing a lasting effect even when it’s totally gone.

 

[Martin aka paused||M.E.]

This is really interesting. How long has it been since your last dose? I’m wondering if this is happening because of the very long half-life of the drug and that you still have some in circulation, or if it’s really causing a lasting effect even when it’s totally gone.

Could be possible. Four days ago. I’ll keep you updated.

 

[leokitten]

Here’s someone’s analysis https://mentalhealthdaily.com/2015/10/30/how-long-does-abilify-stay-in-your-system-after-stopping/

Based on the suggested range of half-life range of 75 to 146 hours, it will likely take between 17.18 and 33.45 days to completely excrete Aripiprazole from your body. Most people will excrete the drug in just over a couple weeks after their final dose, whereas others will take considerably longer. Usually those who take longer to excrete the drug are considered “poor metabolizers” in that they lack specific enzymes that aid in metabolism of the drug.

Though you may have fully excreted Aripiprazole from your system in just over 1 month, you will likely not have excreted its chief metabolite known as “Dehydro-aripiprazole.” Dehydroaripiprazole has an elimination half-life of 94 hours, which generally means that it will take longer to excrete than Aripiprazole itself. On average, most people will have excreted dehydroaripiprazole in about 21.54 days.

Most people will have fully cleared the drug from their system within two months, though in rare circumstances, it could take slightly over a month. Keep in mind that the aforementioned clearance times are estimated based on statistical averages from research. Not everyone will necessarily excrete the drug in an “average” amount of time.

 

[Martin aka paused||M.E.]

Here’s someone’s analysis https://mentalhealthdaily.com/2015/10/30/how-long-does-abilify-stay-in-your-system-after-stopping/

Poor Christmas

 

[leokitten]

Poor Christmas

Most people will totally clear it and the metabolite in 3 weeks, max 1 month. Let’s see if you feel worse as the days go by.

 

[Martin aka paused||M.E.]

I read that Zyprexa in ultra low dose might be helpful too, but it’s just anecdotally... does anyone know more about it?

 

[jaybee00]

Dopamine agonists will probably work also.

https://www.indianjpsychiatry.org/a...e=62;issue=4;spage=437;epage=439;aulast=Gupta

Lasted at least 36 months!

 

[leokitten]

I read that Zyprexa in ultra low dose might be helpful too, but it’s just anecdotally... does anyone know more about it?

Olanzapine, while considered an atypical antipsychotic because it has stronger 5-HT2A antagonism properties than dopamine, is still a pretty strong typical antipsychotic to me at any dose.

Compare it’s pharmacology https://en.m.wikipedia.org/wiki/Olanzapine#Pharmacology to aripiprazole.

Olanzapine also has a lot of side effects due to antagonism of muscarinic, cholinergic, and histamine receptors.

 

[Martin aka paused||M.E.]

Olanzapine, while considered an atypical antipsychotic because it has stronger 5-HT2A antagonism properties than dopamine, is still a pretty strong antipsychotic to me at any dose.

Compare it’s pharmacology https://en.m.wikipedia.org/wiki/Olanzapine#Pharmacology to aripiprazole.

Olanzapine also has a lot of side effects due to antagonism of muscarinic, cholinergic, and histamine receptors.

My question was if anyone heard about its effect in ME. Of course this is a dangerous drug

 

[leokitten]

This is just my guess but if a low dose atypical antipsychotic is going to help for ME it probably has to have dopamine partial agonism, not antagonism.

So maybe the new drug cariprazine (Vrylar, Reagila) would be a good alternative? https://en.m.wikipedia.org/wiki/Cariprazine

I’ve read also there are others in the pipeline, such as brilaroxzine (also known as oxaripiprazole), which is aripiprazole with a single carbon changed to an oxygen on aripiprazole’s quinolinone ring. Seems to have different properties. Must have pissed Otsuka off when Reviva patented it!

 

[leokitten]

My question was if anyone heard about its effect in ME. Of course this is a dangerous drug

Sorry yeah I don’t know if anyone has tried it, but just my guess not sure how this type of drug would help it basically shuts off many neurotransmitter systems like many typical antipsychotics do, even though it’s considered atypical.