Abilify- Stanford Clinic Patients

hmnr asg

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Hi there,
I like to give an update about my trial with abilify. I previously reported huge improvements with abilify 1 mg. Since then I have gone up to 2 mg for no reason other than the fact that the lowest dose pill was 2 mg and I kept cutting them inconsistently ( there is no ridge in my 2 mg pill).
I am still doing good ! The 2mg hasn’t really changed things though. I didn’t get any better going from 1 mg to 2mg. As for side effects I haven’t noticed any aside from constipation.
The other day I lifted some weights which is crazy for me since I haven’t even been able to walk more than a block before abilify. But decided to not do that again since I don’t wanna get too ambitious and end up crashing again. I can’t go back to my level of severity before abilify !

I will keep updating everyone on my progress if anything changes.

edit: forgot to mention I also have increased libido as a side effect. However, my libido was nearly zero because I’m also on cymbalta and abilify has increase it somewhat ( still below pre-cymbalta levels ).
 
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leokitten

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I like to give an update about my trial with abilify. I previously reported huge improvements with abilify 1 mg. Since then I have gone up to 2 mg for no reason other than the fact that the lowest dose pill was 2 mg and I kept cutting them inconsistently ( there is no ridge in my 2 mg pill).
I am still doing good ! The 2mg hasn’t really changed things though. I didn’t get any better going from 1 mg to 2mg. As for side effects I haven’t noticed any aside from constipation.
The other day I lifted some weights which is crazy for me since I haven’t even been able to walk more than a block before abilify. But decided to not do that again since I don’t wanna get too ambitious and end up crashing again. I can’t go back to my level of severity before abilify!
How long have you been on Abilify?
 

leokitten

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For those who know more about Abilify losing its effect: is it because the brain gets used to the drug? So that just in theory a withdrawal could be beneficial?
I really think no one has any idea. We have no evidence on how low dose Abilify even improves ME symptoms, just ideas/hypotheses.

My guess is it isn’t tolerance, because these drugs are effective long-term for people with psychotic disorders, but that it’s giving you symptom improvement and some exertion capacity just not enough to do right now what you tried to do which caused your crash, and that you have to go way slower about things. Abilify might continue to give improvements over time but it’s happening slower than you maybe want.

Also, since it’s brought you out of very severe, I would recommend if you have the energy to think about trialing additional treatments like diet changes or supplements that have helped people. Things that didn’t work for you before might work really well with Abilify. Abilify might only be one component which gives some capacity and you need others to bring on additional capacity over time. Of course ignore this advice if you think this will make you worse.
 
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I really think no one has any idea. We have no evidence on how low dose Abilify even improves ME symptoms, just ideas/hypotheses.

My guess is it isn’t tolerance, because these drugs are effective long-term for people with psychotic disorders, but that it’s giving you symptom improvement and some exertion capacity just not enough to do right now what you tried to do which caused your crash, and that you have to go way slower about things. Abilify might continue to give improvements over time but it’s happening slower than you maybe want.

Also, since it’s brought you out of very severe, I would recommend if you have the energy to think about trialing additional treatments like diet changes or supplements that have helped people. Things that didn’t work for you before might work really well with Abilify. Abilify might only be one component which gives some capacity and you need others to bring on additional capacity over time. Of course ignore this advice if you think this will make you worse.
so think it’s a crash because it came suddenly... there was no slow wearing off, but Friday evening, after a busy day, fatigue and weakness came in... but since it’s not better yet I’m afraid Abilify might not work anymore ... but I like your idea that it still works but slowly
 

leokitten

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so think it’s a crash because it came suddenly... there was no slow wearing off, but Friday evening, after a busy day, fatigue and weakness came in... but since it’s not better yet I’m afraid Abilify might not work anymore ... but I like your idea that it still works but slowly
Well I really hope you come out of the crash, it’s common for them to last days so not surprised even with Abilify.

Who knows with this treatment and your particular ME state, but based on what I’m reading from you, it looks like Abilify has given you X% global ME improvement now after taking for the period of time you have, but even with the X% improvement from your very severe state to now you still have seriously limited capacity. You might mentally feeling like you have way more capacity than you really do.

Abilify might very well continue to increase your capacity slowly over time if you make sure not to overexert or crash anymore. It might also never give you more than the X% improvement you’ve gotten up to now which is still very positive and great for a treatment. But if as you say you were continuing to improve as of last week then I think this is less likely right now.

One thing too Martin is that you clearly are starting to build back from muscle atrophy, so beware because your body is starting to use way more energy than it did before as you move more and have muscle gains. So likely if you want to continue to do that you have stop other things that you added.

I found it really surprising that in your ME state even with improvements you started working again. I privately thought to myself that is not good you are really jumping the gun since you likely have many other aspects of your life which are more important that you need to build back and each aspect requires so much energy. Working even sedentary telework consumes a lot of energy even if you aren’t feeling it will Abilify. I don’t know anyone with ME with your current severity level that is even close to working.
 
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hmnr asg

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@Martin aka paused||M.E.
I second what @leokitten says. Over the years I have noticed this same cycle with myself:

1- try something that gives me x% improvements
2- remember that I have lost 10 years of my life
3- decide that this is the cure and im fine now
4- push myself as far as i can
5- CRASH
6- :cry:

Abilify has helped me a lot too but I still have ME and can crash. I might have gotten 20% improvements which is great but I still am pretty ill. I still rest as soon as im tired and go to bed. I hope you slow down and recover from this crash.
 

leokitten

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@Martin aka paused||M.E.
I second what @leokitten says. Over the years I have noticed this same cycle with myself:

1- try something that gives me x% improvements
2- remember that I have lost 10 years of my life
3- decide that this is the cure and im fine now
4- push myself as far as i can
5- CRASH
6- :cry:

Abilify has helped me a lot too but I still have ME and can crash. I might have gotten 20% improvements which is great but I still am pretty ill. I still rest as soon as im tired and go to bed. I hope you slow down and recover from this crash.
I’ve also made this huge mistake so many times I’ve lost count, but never again. I’ve struggled with it for a long time but have come to terms that even with treatment we will very likely never do many or most of the things we used to do in life and definitely not at the rate and concurrency we used to.

We have to just put our previous life in the rearview window. It’s not being hopeless or depressing it’s just cold stark reality given no understanding of this disease. With these empirical treatments you can get some substantial improvements, but you have to always evaluate if you want one thing back (like to do some part-time telework again) you have to permanently give up on 10 other things (like any physical activity). Choose the few that are most important to your happiness and say goodbye to the rest.
 
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leokitten

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The other thing I’ve always believed is that the required exertion capacity to move up in severity levels in ME and moving towards normal activity is not a linear function, it’s exponential.

The increase in exertion capacity to go from very severe to severe isn’t very much, to go from severe to moderate is quite a lot, to go from moderate to mild is huge, and to go from mild to normal is just enormous. That’s why once we improve we mistakenly always think the next step up in activity is going to be the same height, nope it’s a mountain.

Remember that by many metrics just having mild ME you’ve lost 50% of your pre-illness capacity. Forget about the ME severity scales commonly used with % disability, they do not take into account any parts of life that aren’t mostly essential, only self-care, going out for needs, and work capacity, but not everything else we used to do in our lives that remember you were forced to give up when you had “mild” ME.
 
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hmnr asg

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I feel the same thing. Shucks! Not sure if restarting is going to help. Please let me know if it helps in your case.
Also, how can we find out if this wearing down effect is due to abilify stopping to work or we pushing ourselves more than we can and crashing?
Also, @Martin aka paused||M.E. , let us know how youre doing.

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.
 

hmnr asg

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I dont think anyone really knows! And the ones who respond will inevitably say: "you pushed yourself too hard". Nobody knows what is CFS so there is no way to answer this question in any substantive way.

It just comes down to five choices:
  1. keep your dose
  2. go down on your dose
  3. go up
  4. augment with something else (like an SNRI or celebrex)
  5. or give yourself a break from this pill and then restart
I think we can get more data points from experimenting than from conjecture.

As for me, I am on abilify for 2mg currently and been on it for two months. Taking it with cymbalta and i take occasional celebrex (three times a week). My improvements are diminished somewhat but still way better than before taking it.

Could it be because im taking it with cymbalta? or perhaps I am somewhat new on this (2 months) and the eventual crash hasnt come yet?