Abilify tolerance

[leokitten]

Today I'm pretty much back to Abilify fully working again. As you all know, it's super frustrating because many ME symptoms after exertion feel almost identical to coming down with flu, except without the respiratory symptoms.

I went to get PCR tested for COVID a couple days ago, but it came back negative and I think I waited too long and the active infection, if that's what it was, already passed. We'll see I'm still not super sure what the heck happened. If it happens again soon then will point to Abilify not working as well, but so far seems like it's back and I'm exerting a lot with very little symptom worsening if any.

 

[GlassCannonLife]

Today I'm pretty much back to Abilify fully working again. As you all know, it's super frustrating because many ME symptoms after exertion feel almost identical to coming down with flu, except without the respiratory symptoms.

I went to get PCR tested for COVID a couple days ago, but it came back negative and I think I waited too long and the active infection, if that's what it was, already passed. We'll see I'm still not super sure what the heck happened. If it happens again soon then will point to Abilify not working as well so soon, but so far seems like it's back and I'm exerting a lot with very little symptom worsening if any.

Ah wow that's great news leo! Super happy for you!

 

[Jessie 107]

Abilify has been working well for me for nearly two years. Recently I decided to take 2 mg every other day instead of every day but I started having more crashes again.
So I am back to taking it every day, just hoping that it isn't losing its effectiveness.
We shall see. 🤞

 

[hmnr asg]

Today I'm pretty much back to Abilify fully working again. As you all know, it's super frustrating because many ME symptoms after exertion feel almost identical to coming down with flu, except without the respiratory symptoms.

I went to get PCR tested for COVID a couple days ago, but it came back negative and I think I waited too long and the active infection, if that's what it was, already passed. We'll see I'm still not super sure what the heck happened. If it happens again soon then will point to Abilify not working as well, but so far seems like it's back and I'm exerting a lot with very little symptom worsening if any.

Its so great to hear you were able to get abilify to work again! I was pessimistic that this would happen since for many it seems to never work again once it poops out (this is deduced also from what i saw on the facebook LDA group as well). But thankfully its working for you again! I think you might be able to indefinitely stay on it and take holidays if it poops out again. If it worked once there is no reason it wont work again.

I will also try abilify again for the Nth time to see if it can somehow work again . Who knows, im in a new city, it might be different this time

 

[leokitten]

I just got a second COVID booster shot, has made me ill again like coming down with flu and immune system ramped up, minus respiratory symptoms. Hopefully goes away soon

 

[leokitten]

Its so great to hear you were able to get abilify to work again! I was pessimistic that this would happen since for many it seems to never work again once it poops out (this is deduced also from what i saw on the facebook LDA group as well). But thankfully its working for you again! I think you might be able to indefinitely stay on it and take holidays if it poops out again. If it worked once there is no reason it wont work again.

I will also try abilify again for the Nth time to see if it can somehow work again . Who knows, im in a new city, it might be different this time

I went into it this second time expecting it not to work at all too. Though so interesting and strange how it started very differently this time, started working very well after only a week on 0.25 mg . Hoping that doesn’t mean it’s going to progress faster to reduced efficacy.

Maybe the other meds I’ve been taking all the time (see previous post) during both low-dose Abilify cycles and pauses somewhat resets things in my brain or wherever Abilify’s targets are in ME.

 

[GlassCannonLife]

@leokitten / anyone else - sorry to post here but too unwell atm to try and find the other thread..

Just mixed my first pill with some water in a 50 mL tube. It doesn't mix completely but I can shake and then draw with a syringe. Does it need to be refrigerated? Thanks a lot.

Starting at 0.25 mg.. First time ever. Wish me luck..


Edit: also just saw the list of side effects oof.. Diabetes.? Anyone had that from here..?

 

[leokitten]

@leokitten / anyone else - sorry to post here but too unwell atm to try and find the other thread..

Just mixed my first pill with some water in a 50 mL tube. It doesn't mix completely but I can shake and then draw with a syringe. Does it need to be refrigerated? Thanks a lot.

Starting at 0.25 mg.. First time ever. Wish me luck..


Edit: also just saw the list of side effects oof.. Diabetes.? Anyone had that from here..?

Best of luck! All those side effects are primary for ppl taking antipsychotic level dosages which are 15x or more higher. No one has ever followed patients taking 2 mg per day or less, let alone fractions of a mg.

You weren’t able to get aripiprazole solution?

 

[jaybee00]

@leokitten / anyone else - sorry to post here but too unwell atm to try and find the other thread..

Just mixed my first pill with some water in a 50 mL tube. It doesn't mix completely but I can shake and then draw with a syringe. Does it need to be refrigerated? Thanks a lot.

Starting at 0.25 mg.. First time ever. Wish me luck..


Edit: also just saw the list of side effects oof.. Diabetes.? Anyone had that from here..?

Abilify is not soluble in water—on FB group there is an instruction as to how to solubilize.

 

[GlassCannonLife]

@leokitten no just got 10 mg pills..

@jaybee00 ah ok.. Do you know the gist? I don't have fb and am doing very badly atm so can't search much/at all. Any issue just mixing the suspension and drawing up when it looks homogeneous? More risk i guess?

 

[leokitten]

@leokitten no just got 10 mg pills..

@jaybee00 ah ok.. Do you know the gist? I don't have fb and am doing very badly atm so can't search much/at all. Any issue just mixing the suspension and drawing up when it looks homogeneous? More risk i guess?

If you can in future get the standard aripirazole 1mg/ml solution, it comes with a large dropper with measurement markers easy to even measure down to 0.1 mg. It’s a generic med too so relatively cheap. This is what I use.

 

[Judee]

I also think I saw a few posts on the FB group where people actually found if they were developing tolerance that stepping the dose down a bit helped. (I don't think I imagined that anyway. )

It seems counterintuitive but maybe something else to try as well if it seems to stop working for someone.

 

[leokitten]

I’m continuing to only take 0.25 - 0.3 mg, since on that I’ve already achieved very good results this second time after that initial week taking it with no improvement. Decided not to go up because it’s true for some people going higher only appears to give a boost for a short while before disappearing, and maybe the negative metabolic and endocrine effects of Abilify, which are likely only relevant at higher dosages, can reduce its efficacy in ME patients. Could be totally wrong here too but just a hunch. It could be something else

 

[leokitten]

Going through this second cycle and feeling pretty strongly where Abilify is targeting my ME and how causes such a dramatic improvement, for sure this medication doesn't target some core part of ME, because if I've physically/mentally exerted close to pre-ME levels of activity for a long period of time I will still get ME total body flu-like symptoms.

But seriously it doesn't matter, how many FDA approved drugs don't target core pathology. I can tell a huge part of whatever is happening in ME causes serious neurological dysfunction in the brain and many of the most terrible symptoms come from this, you can feel it when Abilify works for you that it simply corrects/stabilizes this neurological dysfunction, and all the terrible ME symptoms that come from it are basically squashed or greatly reduced.

I still feel groggy and and little rundown when I wake up (nowhere as bad as without Abilify), but just like in the first cycle it much more quickly improves in the morning compared to my baseline. Maybe it's chronic neuroinflammation that eventually causes Abilify to stop working, which I think someone mentioned before, could be that because I've been constantly taking moclobemide and pentoxyfilline every day (sorry if I forgot to mention the last drug in any previous post) it might combat this and why Abilify works again, no idea.

 

[Whit]

Has anyone had Abilify stop working and then start working again without changing the dose or stopping it? Or has anyone heard of this happening?

It's stopped working for me, and I actually think I've gone in the opposite direction and it's causing some depressive symptoms.

My theory about Abilify is that it creates a manic state in us, which helps ME/CFS symptoms, because the way I felt when it was working for me I have realized now that it's not working was definitely manic. I HAD to be creating something at all times. I actually loved it. But now I kinda of feel like it has moved in the other direction to the depressive side. So I'm tryin to figure out what to do.

It didn't just help with mental function, it also lowered my sensitivities which were through the roof before Abilify, and interestingly, they keep getting lower despite Abilify slowly helping my mental clarity and function less and less for the last year. So I'm worried about stopping it because the heightened sensitivities were a nightmare, I still have severe PTSD from it.

thanks.
Whitney

 

[jaybee00]

Hello @Whit

There is one report here of a person who withdrew from Abilify for about 4 months and then found that it worked again when they restarted

https://forums.phoenixrising.me/threads/abilify-and-energy.20815/#post-832373

I think most of the people on here who tried to restart after becoming tolerant found that it no longer worked for them.

One issue is that it is not good to continually withdraw from psychiatric meds due to withdrawal concerns. Abilify worked great for me for about 6 months or so, until I became tolerant—but I experienced withdrawal symptoms upon stopping (insomnia, body pains, muscle twitching, etc.) that lasted for months. Not everyone experiences withdrawal issues however.

Another option might be to switch to other meds in the same class as Abilify—Rexulti https://en.m.wikipedia.org/wiki/Brexpiprazole and Vraylar .https://en.m.wikipedia.org/wiki/Cariprazine Patients have found that both of these meds also “work” for MECFS. But it may be likely that patients will also develop tolerance to these meds as well.

Lastly it would be greatly appreciated if you could see if your dad could reach out to academic experts in the psychopharmacology field to see if they might have any suggestions regarding overcoming tolerance to Abilify, as this seems to be a common problem for MECFS patients.

Hope this helps.

 

[Whit]

Lastly it would be greatly appreciated if you could see if your dad could reach out to academic experts in the psychopharmacology field to see if they might have any suggestions regarding overcoming tolerance to Abilify, as this seems to be a common problem for MECFS patients.

He already has of course. He’s doing everything he can. No one really knows is the unfortunate answer. I spoke with one of my doctors who has extensive knowledge of the whole metabolic cycle and how various nutrients and vitamins and supplements affects very complex pathways. You should see the charts with all the interconnections he shows me. Crazy I don’t even bother trying to make sense of them.

but he suggested Rexulti. So I’m going off Abilify and starting that soon. All my doctors said that the half life of Abilify is so long you don’t need to taper it. But that doesn’t invalidate your withdrawal symptoms.

he also said that PQQ can help with dopamine levels in the brain IF they are being blocked by a certain pathway. And Abilify increases dopamine. You all get it in your food so it’s not as big a deal but I get none in my feeding formula. So I’m starting that tomorrow.

But taking PQQ might be a good idea for ME/CFS patients. Since increasing dopamine seems to help us.

 

[Jessie 107]

@Whit
I'm sorry to hear that Abilify has lost its effects for you.
Please keep us updated on how you get on with Rexulti, energy allowing ofcourse 😊

 

[Martin aka paused||M.E.]

I’m sorry it didn’t last.

i had they same idea re Rexulti… it didn’t work. But insomnia was brutal.

all the best!

 

[nsdn]

15 months of Abilify + liquid Solian and working great.