Abilify

[Frunobulax]

There are a few hits regarding abilify in this forum -- which of you have taken Abilify and in which doses? Specifically, has anyone been on low dose Abilify?

Background is that low-dose Abilify is pretty much the only drug that seems to work for ME/CFS, where people take Abilify around 1mg/d as opposed to the normal 15mg/d. The interesting thing is that it apparently works very different in low doses, it's supposed to decrease brain inflammation and increase/stabilize dopamine, while higher doses tend to decrease dopamine. (A quick google search couldn't find any research backing this up though.) But most of the horrible side effects were observed on the regular, much higher doses.

I've started at 0.2mg/d last week and the last few nights were a dream, I woke up refreshed and no RLS to speak of. Much too short to say anything, but enough to ask here.

[ViewsAskew]

Hope it keeps working for you. I have not used it.

[Frunobulax]

BTW I found no studies but at least a blog entry that seemed to reasonably explain why Abilify works differently at low doses: https://thoughtbroadcast.com/2011/09/13 ... t-matters/

Low dose abilify (around 1mg/d) might actually be worth a try for RLS, because it seems to stabilize Dopamine at low doses. Which might be a very good thing for those of us who took dopamine agonists and augmented, so the DAs messed with our dopamine system. And there was the conjecture that RLS might be caused if dopamine levels are normal on avergae but have higher fluctuations than in normal controls.

However, the side effects can be really bad, unfortunately. So it's perhaps a tough sell to recommend this on such weak evidence. (Even though we have no studies which of the side effects occur at the low doses as well.)

[ViewsAskew]

BTW I found no studies but at least a blog entry that seemed to reasonably explain why Abilify works differently at low doses: https://thoughtbroadcast.com/2011/09/13 ... t-matters/

Low dose abilify (around 1mg/d) might actually be worth a try for RLS, because it seems to stabilize Dopamine at low doses. Which might be a very good thing for those of us who took dopamine agonists and augmented, so the DAs messed with our dopamine system. And there was the conjecture that RLS might be caused if dopamine levels are normal on avergae but have higher fluctuations than in normal controls.

However, the side effects can be really bad, unfortunately. So it's perhaps a tough sell to recommend this on such weak evidence. (Even though we have no studies which of the side effects occur at the low doses as well.)

Interesting hypothesis.

[Oozz]

I posted a research paper indicating abilify for augmentation. Here it is https://pubmed.ncbi.nlm.nih.gov/3781817 ... mentation.

[Frunobulax]

I posted a research paper indicating abilify for augmentation. Here it is https://pubmed.ncbi.nlm.nih.gov/3781817 ... mentation.

Interesting, thanks for posting that! All 4 patients augmented on pramipexole, same as me. They used higher doses up to 4mg, and went up much faster (1mg/week). The "low-dose" abilify approach has a max dosis of 2mg. Given the long half life of 3 days, only 80% of the level is reached after a week, so IMO increasing the drug every week is too fast. Also seems that the dosage was a bit arbitrary (considering that the smallest tablet size is 2mg, but I do have a liquid version with 1ml=1mg), would have been interesting to see what could have been achieved at even lower doses.

I'm at 0.5mg/d after 4 weeks now. And from my side effects I believe I should have gone up slower, starting at 0.1mg/d and an increase every 2 weeks. (But so far all side effects subsided about a week after each dose increase.)

The results are encouraging: So far I was able to cut my oxycodone in half (from 20mg/d to 10mg/d), but you know, if it doesn't last then it's not true. So judgement is still out there. I'll report more in a month or two. (And I haven't even tried to go lower on oxycodone, considering that my doc warned against cutting opioids too fast. Might try that after the next dose increase.) Considering that it's over 10 years that I last took a dopamine agonist, this either means augmentation is much more permanent than assumed (if abilify truly reverses augmentation) or there is something else going on. I wouldn't be surprised if augmentation is (possibly) permanent, considering that some of us augmented in a very short time (2 years in my case) and never returned to baseline after coming off dopamine agonists.

[Oozz]

So, you are combining it with opioids? It’s additive effect is helping your sleep? If so, there are some papers supporting the use of Abilify with opioids to mitigate some of the adverse dopamine effects.

I am probably not the best example since I’m a .0001%

I’m going to ask my doctor to prescribe this to me tomorrow, but I’m still confused about its mechanism of action. It seems to prevent down regulation of the d2r and tolerance, but the a bit component of augmentation is the d2r-d1r heteromer. Maybe without the down regulation the heteromer isn’t as active and the d1r activity doesn’t spike.

[Frunobulax]

So, you are combining it with opioids? It’s additive effect is helping your sleep? If so, there are some papers supporting the use of Abilify with opioids to mitigate some of the adverse dopamine effects.

My primary issue is ME/CFS, and Abilify is one of the few possible off-label-drugs. But I do take oxycodone for RLS as well.

Abilify has allowed me to cut the oxycodone in half, and I will see in time if I can cut it further or get off it altogether. But this was more an incidental and unexpected benefit. In fact 2 neuros warned me against abilify as it can cause RLS as side effect, probably in much higher doses

[Lissa496]

As someone who also augmented on Mirapex and I am also on oxy I am very interested in how you do on this Abilify! Please keep updating your progress. If this works, I will bring this up to my doctor at my next 6 month appointment!

Good luck ~ Lissa

[Frunobulax]

As someone who also augmented on Mirapex and I am also on oxy I am very interested in how you do on this Abilify! Please keep updating your progress. If this works, I will bring this up to my doctor at my next 6 month appointment!

I will! The issue however is that Abilify stops working for many ME/CFS patients, and the best chances are to stick to low doses and increase doses very slowly. So far I verified that I can't reduce my oxycodone any further (probably -- I managed 2 nights with 5mg instead of 10, but followed by several nights with RLS symptoms so I went back to 10), and I may stick with the current dosis for a while. So I'll be way below what the study used for RLS...

Reporting back in a couple of months

[Frunobulax]

I’m going to ask my doctor to prescribe this to me tomorrow, but I’m still confused about its mechanism of action. It seems to prevent down regulation of the d2r and tolerance, but the a bit component of augmentation is the d2r-d1r heteromer. Maybe without the down regulation the heteromer isn’t as active and the d1r activity doesn’t spike.

Did you get it? Very interested to hear if this works for other sufferers as well.

For the record, I saw an almost immediate effect with 0.2mg/d. (And getting low doses may be an issue. I have a liquid form at 1mg/ml but some countries/healthcare providers support only pills that start at 5mg or so.) I also saw side effects like insomnia and headaches that went away after a week. But my recommendation would be to start with micro doses and up them very slowly.