Aripiprazole - Abilify

[benji]

Here is why I tried it. Fluge and Mella are now trialing daratumumab, which inhibit something cd38, which apigenin also can do at best. I have tried an awfully lot of supplements though, also more common ones that has helped others but not me, this seems to be my lucky shot.

Hi all,

So here are some comments and personal views from the conference :

-Still no effort to investigate ME/CFS cases not originating from viral infections. Not good.

-Very optimistic about the case presented by Oysten Fluge and anti-CD38 therapy. I had the chance to talk to him and show some associations of his work in CD38 with other findings in ME, more specifically purinergic signaling , DHFR,nitric oxide, tetrahydrobiopterin. Interestingly , apigenin (identified by machine learning) is a CD38 inhibitor : https://www.s4me.info/threads/apige...amelioration-of-me-symptoms.7872/#post-140372 . In the end of our talk he said : "send me whatever you have" ))

Of note : One slide on Fluge's presentation has shown that there was no organ damage found in post mortem ME/CFS patients. I specifically asked him whether they looked at liver tissues and he said that they didn't. I then showed some Fibroscans of ME/CFS patients and asked him if they could test patients with Fibroscans.


-I was very happy to see the work presented by Leonard Jason (DePaul University) : machine learning and network analysis methods being used to try to identify key differentiators of ME/CFS vs HCs (see attached photo).

-Also the work by Nuno Sepuvelda who used data from Carmen Scheibenbogen and then applied machine learning algorithms. Quite possibly there will be a joint effort with Nuno who is very committed and enthusiastic for medical research and the use of mathematics / algorithms to crack ME/CFS. (see attached).

-And last but not least , I was able to speak with Dr Prusty. He is very specific to what he wants (which is good) , told me that one of the proteins he found can be found mainly in hepatocytes -as he knows my persistence with everything liver related- and told me to send him anything that I could share with him (which was nice).

View attachment 19527

 

[Jaybee00]

Interesting. I’m guessing this is different—Dara kills cells expressing cd38, whereas apigenin inhibits the synthesis of CD38

 

[Rick Sanchez]

I was really worried about starting LD Abilify after reading some patients reporting negative reactions to it. Was it worth the risk? Well my family guilt tripped me into it and just like LDN... just... absolutely nothing. Can`t feel any difference at all. Kinda funny given how worried I was, and how much I have been seeing it mentioned on the subreddit.

Looking and comparing with the Rituxi trials, I think it is safe to assume that a lot of the ´´improvements`` are just random fluctuations, placebo and the other usual suspects. Of course there might be a small subset who experience a genuine improvement, as reported in this thread. We just don`t know.

 

[rapidboson]

Charité is planning a trial with aripiprazole, according to their Gantt chart presented at the Fatigatio conference.
Start in early 2026, seems to be called ARISE.

 

[Yann04]

Charité is planning a trial with aripiprazole, according to their Gantt chart presented at the Fatigatio conference.
Start in early 2026, seems to be called ARISE.

View attachment 28512

Any idea if it will be a double blind RCT or just a pilot?

 

[rapidboson]

No idea, sorry.
As they already use it in the clinic, I would assume they're going for a proper RCT.

 

[leokitten]

Don’t know why I didn’t post this sooner, to show the LDA sceptics that for us temp responders the effects are real. From my phone health app



My housebound baseline is in the few hundreds and you can see for months that’s how I am between LDA cycles. During LDA it shoots up to 7-8k and more average per day! Then the effects slowly decrease until I stop taking it and pause again for months until the next time. Can’t make this shit up it’s doing something

 

[Jaybee00]

@leokitten very convincing data, but I am already a believer.

I wonder if a response to Abilify et al. might be correlated with a response to the biological (mab) drugs.

If yes, you could pre-screen patients inexpensively for 2 weeks. Responders could then be treated with Daratumumab with the expectation of a higher response rate.

 

[Trish]

Don’t know why I didn’t post this sooner, to show the LDA sceptics that for us temp responders the effects are real.

I don't know whether I'm counted as a skeptic. I would never disbelieve any pwME's report of their experience, and I'm glad it's periodically still working for you. My concern is, and always has been, that nobody seems to be doing a clinical trial to find out whether this is an unusual or common effect for pwME.

 

[poetinsf]

Then the effects slowly decrease until I stop taking it and pause again for months until the next time.

So, the effect lasts a few weeks and then dissipates? If it is reliably reproducible, there must be something to it, least for your ME/CFS. Ability is a dopamine stabilizer, btw, so it may affect different people differently.

 

[Peter T]

If reasonably predictable even a short term effect may have a very real practical value.

I have just had one of my godchildren visiting for a week. He really understands my limitations and did all the cooking while he was here, but I am still needing time to recover and would have loved to do have been able do more while he was here.

 

[Yann04]

My worry, is that it just masks symptoms/PEM which allows you to do more, hence the very common “poop out” experience.

I know atleast for me I would have trouble telling between a short term improvement and a masking of pem/symptoms.

 

[Arfmeister]

My housebound baseline is in the few hundreds and you can see for months that’s how I am between LDA cycles. During LDA it shoots up to 7-8k and more average per day! Then the effects slowly decrease until I stop taking it and pause again for months until the next time. Can’t make this shit up it’s doing something

Without going through 533 posts in this thread: up to what dosage do you go?
– and how quick ?

In general I’m interested up to what level responders go.
The FB-page and the paper I have seen takes 2 mg as the golden standard.

But I have strong doubts that this is valid specially a) if you read through anecdotes + b) the general different response of (ME-)patients to medication.

I think I’ve read 2 accounts of patients that improved a lot on full dose Abilify - which seems to have a complete different outcome on dopamine.

I think we just know too little about this drug and dopamine + other receptors with ME-patients to know this for sure.

 

[poetinsf]

My worry, is that it just masks symptoms/PEM which allows you to do more, hence the very common “poop out” experience.

The crash may come even if you don't do more. Drugs often entail withdrawal when you stop taking them and you could crash if the brain produces less of what was protecting you from symptoms/PEM. Nicotine seems to be particularly bad in that regard. If the effect lasts weeks and the withdrawal is minimal, however, it may be worth the risk. That's what @leokitten seems to have with LDA.

 

[neophyte32]

Im taking LDA since may. 0,10 then 0,25 until august. Im at 0,45 now, but It's losing its effectiveness. I don't know if I should increase slowly up to 1mg... I'm afraid of the withdrawal afterwards. I'm between severe and very severe; I was doing 1500 to 2000 steps, then I dropped to 300 after a crash following a left side SGB that made me crash 3 weeks ago...
I dont know what to do with that fucking illness.

 

[leokitten]

So, the effect lasts a few weeks and then dissipates? If it is reliably reproducible, there must be something to it, least for your ME/CFS. Ability is a dopamine stabilizer, btw, so it may affect different people differently.

It doesn’t totally dissipate it just gets to the point where it’s decreased enough that I know it’s best to stop and take a break. But if I keep taking it it continues to have some effect that improves my baseline a bit.

 

[leokitten]

My worry, is that it just masks symptoms/PEM which allows you to do more, hence the very common “poop out” experience.

I know atleast for me I would have trouble telling between a short term improvement and a masking of pem/symptoms.

At least in my case whether it’s “masking” or doing more taking LDA in cycles like this doesn’t have any permanent baseline worsening effect

I know it’s hard to convey clearly but the way it truly feels for me is that it’s not masking but that dopamine dysfunction is in my case a downstream cause of many of my ME symptoms and LDA is improving that but LDA isn’t touching the upstream root causes that are creating the dopamine dysfunction in the first place, and for that reason it loses efficacy over time because the root causes end up counteracting LDA eventually, if that makes sense. That’s what it feels like

 

[leokitten]

Without going through 533 posts in this thread: up to what dosage do you go?
– and how quick ?

In general I’m interested up to what level responders go.

I used to take 0.25 and go up to 1 mg a day and would have a really good response that lasted two months or so before very slowly reducing over months. I would titrate up over a few weeks. This was 2021-2024. Going up higher than 1 mg didn’t help more.

But now I have a big confounding factor, I’ve been taking Zepbound since beginning of 2024 and suddenly after starting that I’ve required a much higher LDA dosage and it lasts about a month or so before it reducing in efficacy more quickly. I now take 3-4 mg a day right from the get go without titrating. Going up beyond 4 mg doesn’t seem to help more.

Zepbound has really mediated the dopamine response to LDA. This is a well known aspect of GLP-1 drugs in the brain they modulate and flatten dopamine signaling. I’ve lost a lot of weight on Zepbound and am at the same weight I was in high school now and much healthier in this respect. So I don’t really want to quit taking it to go back to being overweight even if LDA was better.

 

[neophyte32]

Avant, je prenais 0,25 mg, puis j'augmentais jusqu'à 1 mg par jour. J'obtenais de très bons résultats pendant environ deux mois, avant de diminuer très progressivement la dose sur plusieurs mois. J'augmentais la dose sur une période de quelques semaines. C'était entre 2021 et 2024. Augmenter la dose au-delà de 1 mg n'a pas apporté de bénéfice supplémentaire.

Mais voilà qu'un élément perturbateur important se présente : je prends du Zepbound depuis début 2024 et, soudainement, après avoir commencé ce traitement, j'ai eu besoin d'une dose de LDA beaucoup plus élevée. Cet effet dure environ un mois avant que l'efficacité ne diminue plus rapidement. Je prends maintenant 3 à 4 mg par jour d'emblée, sans ajustement. Augmenter la dose au-delà de 4 mg ne semble pas apporter d'amélioration supplémentaire.

Zepbound a vraiment atténué la réponse dopaminergique au LDA. C'est un effet bien connu des médicaments GLP-1 : ils modulent et atténuent la signalisation dopaminergique dans le cerveau. J'ai perdu beaucoup de poids grâce à Zepbound et j'ai retrouvé mon poids du lycée, en bien meilleure santé. Je n'ai donc pas vraiment envie d'arrêter le traitement et de reprendre du poids, même si le LDA était plus efficace.

Salut
u have not withdrawal s effets ? Im at 0,45, i increased very slowly (0,05 each 2 weeks) since may. It s not working as well when i was at 0,25 mg... i had two months with 1500-2000 steps. I was at 1000 in september. Now im in crash (a left side sgb, bad idea), bedridden, i m increasing LDA. I think 0,05 each week. I want to test a normal (1 mg). What do u think of my strategy ? U are severe ?

 

[leokitten]

Salut
u have not withdrawal s effets ? Im at 0,45, i increased very slowly (0,05 each 2 weeks) since may. It s not working as well when i was at 0,25 mg... i had two months with 1500-2000 steps. I was at 1000 in september. Now im in crash (a left side sgb, bad idea), bedridden, i m increasing LDA. I think 0,05 each week. I want to test a normal (1 mg). What do u think of my strategy ? U are severe ?

I don’t have withdrawal effects no. When I stop taking it continues helping for about 2 weeks or so and then around week 3 I come crashing down back to my baseline . It’s not a withdrawal per se even though it can feel like it, it’s just rapidly going from a good level back to where I was before and that change feels bad but it’s not a real withdrawal