Abilify

[Frunobulax]

Final report (hopefully). I reached the target dose of 2mg Abilify a while ago. The dose increase didn't change to my RLS in any way, but the good news is that the positive effect is still there. I take 7.5mg Oxycodone a day which almost completely controls my RLS. I hope to some day go down to 5mg or even further, but for now I need 7.5mg.

As conclusion to my n=1 experiment, a very low dose (say 0.5mg/d) Abilify allowed me to go down from 20mg (or higher at times) to 7.5mg Oxycodone, with overall much better sleep. I both can fall asleep easier (I get a strong alerting effect from Oxycodone) and I wake up more refreshed.

[Polar Bear]

Well done, your perserverance has paid off.

[ViewsAskew]

Final report (hopefully). I reached the target dose of 2mg Abilify a while ago. The dose increase didn't change to my RLS in any way, but the good news is that the positive effect is still there. I take 7.5mg Oxycodone a day which almost completely controls my RLS. I hope to some day go down to 5mg or even further, but for now I need 7.5mg.

As conclusion to my n=1 experiment, a very low dose (say 0.5mg/d) Abilify allowed me to go down from 20mg (or higher at times) to 7.5mg Oxycodone, with overall much better sleep. I both can fall asleep easier (I get a strong alerting effect from Oxycodone) and I wake up more refreshed.

That is incredible!

[Lissa496]

Thank you for your update and experiment! I have a doctor's appointment early next year and will ask to try this mediation.

[Oozz]

It definitely works for RLS, but there is a ceiling on how much it increases dopamine. I can’t opine on whether or not it causes augmentations, but the MOA very much leads me to believe it doesn’t cause augmentation. It’s not prescribed for RLS because it’s a dirty drug, it’s not fully understood.

Studies say it doesn’t become effective until 2-4mg (still a low dose). I’ve taken it up 5mg, it was partially effective for my RLS but my RLS is terrible. I take it at 3-4mg with methadone down and it makes me feel better either by: 1) improving the quality of my sleep or 2) reducing fatigue.

[Frunobulax]

Studies say it doesn’t become effective until 2-4mg (still a low dose). I’ve taken it up 5mg, it was partially effective for my RLS but my RLS is terrible. I take it at 3-4mg with methadone down and it makes me feel better either by: 1) improving the quality of my sleep or 2) reducing fatigue.

tl:dr: It does something at much lower doses, but not for everyone and we don't know what and why.

Long version:
A lot of people use Abilify for ME/CFS, even though there is only one study where participants averaged 1mg/day but still reported significant improvements (https://translational-medicine.biomedce ... 21-02721-9), and this is confirmed by several ME/CFS patients that I know personally. It worked for 70% of participants in the study, and among the responders, some patients saw significant improvement at much lower doses than 1mg/day while others needed the maximum of 2mg/d allowed by the study design. In ME/CFS the Stanford group -- who did the study -- nowadays start new patients on Abilify with 0.1mg/d and increase doses by 0.1mg every 2 weeks, as they realized the pace from the study (starting at 0.25mg/d) was too fast.

And for those of you not familiar with ME/CFS, apart from Abilify there is not a single drug that was able to show statistically relevant improvement for this disease, so it's quite a unique drug. There are a few small scale papers on other drugs claiming improvement, for example Rituximab, but results could not be replicated in followups [*]. As to Abilify, there are only conjectures why it works, focusing on an increase of dopamine. So IMO there can't be any doubt that Abilify is effective for something, at doses way below 2-4mg, and probably increases dopamine at these low doses.

I assume the studies you are referring to were about the antipsychotic effects?

As for RLS, the one paper linked here (at n=4 I'd call it a case report) started all 4 patients on 1mg/d and increased the dose by 1mg per week, which is a lousy study design, IMO. Abilify has a half life of 3-4 days, so after a week your blood levels are still increasing and at only 80% of the final, and you'll need a bit of time to let the body adapt to the changed levels of neurotransmitters anyway. So it would be very interesting to see a study done at levels comparable to the CFS protocol, starting at 0.1mg/d and increasing slowly. (Something that perhaps the RLS foundation would have to finance, as the potential profits from low dose Abilify are way too low to matter.)

Back to my n=1 case: My bloodwork shows significantly elevated dopamine and serotonin with Abilify (way higher than normal range) and slightly higher noradrenaline than before (but in normal range), while the other neurotransmitters are comparable to the previous test. The elevated dopamine might be responsible for the RLS improvement.



[*] ME/CFS is criminally under-researched, considering that the incidence is 0.3% of the western population and it's a very severe diseases. Yet medical research has all but ignored it and tried to put it into the psychiatric corner, until Long Covid came around and proved without doubt that it's not psychosomatic. But there are very few researchers in the world that have expertise in CFS research, and there is little to no funding for studies. So the few studies we have are of bad quality, use very small sample sizes and have conflicting results. A retrospective study on 100 participants like we have here for Abilify is about the best we have in the field.

[Lissa496]

Thanks for the update!