Long Haul Mono
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I was directed to take it one day on one day off, and each day on I would increase by one pill, so it took roughly a week to get where I am today with Abilify.
Abilify- Stanford Clinic Patients
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Long Haul Mono
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I'm not sure this is in the same category as anti-depressants, and I think I had my time with these meds, ie SSRIs and similar really mess up my health. I tried a tri-cyclic anti-depressant many years ago as an off script drug for idiopathic hypersomnia (prior to being diagnosed with ME). I was on them for the better part of the year and it took me about year off the drug before my body stabilised. For me, reuptake inhibitors are not the way forward.
My GP basically said Abilify will either work or it won't. Based on yesterday I'd say I'm probably done with it. I felt like garbage until mid afternoon when it appeared to wear off.
I've tried LDN as well, a number of years ago. No effect other than side effects.
Anti-depressants may work well with some people, and if you're not experiencing any bad side effects then it's all good, but I'm finding myself turning away from pursuing drug solutions that have never provided me any sustained treatment for my ME.
Interesting. I'd seen others try to use the lowest dose possible that had effect, so it's a bit surprising to ramp up that quickly. But I guess every physician has a different strategy.
This is what I’ve heard before as well…
hmnr asg
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This thread is pretty dead it seems. I just wanted to give an update.
After LDA pooped out I switched to Rexulti, it did nothing for me. After that I'm currently on Vraylar (same family as abilify and rexulti) and I think maybe its helping me 2%. Not all that useful
After LDA pooped out I switched to Rexulti, it did nothing for me. After that I'm currently on Vraylar (same family as abilify and rexulti) and I think maybe its helping me 2%. Not all that useful
You increased dose way too fast. Abilify takes two weeks or so to start working and has a very long half life so it builds up in your system over weeks. Start with the smallest dose possible and stay on it for at least 2 weeks. Increases in dose should be as small as possible and always waiting at least two weeks at each new dose.
SlamDancin
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I was just started on 1.5mg Vraylar (Cariprazine) for non-CFS reasons. As you may know it’s much stronger at the D3 dopamine receptor relative to D2 than Abilify. How long have you been taking it and what dose? Glad to know it’s helping you and not hurting. I had the weirdest insomnia last night where I fell asleep only to wake up shortly after all throughout the night. Have you noticed any insomnia?This thread is pretty dead it seems. I just wanted to give an update.
After LDA pooped out I switched to Rexulti, it did nothing for me. After that I'm currently on Vraylar (same family as abilify and rexulti) and I think maybe its helping me 2%. Not all that useful
Long Haul Mono
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At the moment I've stopped with Abilify. I'll need to discuss what to do next with my GP.
My concern was the bad side effect having taken 0.5mg (the first single pill dose). It basically knocked me flat, with severe fatigue that eased off after a few hours.
I'm not keen on drug solutions. I'm happy to take them for a short term to serve a purpose, so I'll be discussing this with the GP as well, ie what's the long term plan here?
Judee
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I agree with Leokitten. You should consider joining the FB group. I think it's called, Abilify for ME/CFS."
Some there even start with super low doses like .025mg. Iirc anything over 2mg is not considered low dose anymore for this disease/ group. ??
Dude
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I believe it varies for each individual based on personal experience. In my case, I found that a dosage of 2.5g every other day yielded the most beneficial results. I initiated this regimen immediately and encountered no adverse effects. Given the absence of formal studies, you're likely to encounter a range of opinions on the matter.
Virtually all adults over 30 yo with ME/CFS lasting more than 3 years will never have it resolve on its own.
I started a third cycle of low dose Abilify March 10th. It’s worked again for me. For those not familiar I did the first trial in 2021 then took a 6 month break and did a second cycle in 2022 and both worked it dramatically reduces (or covers up) my ME symptoms so I can function again. This time I took a much longer break mostly for reasons not related to ME.
I don’t know why I’m in the subset of people where it works each time after a break. During each cycle it works the best in the beginning and then slowly loses efficacy over a few months until I feel it’s not helping enough anymore and then I stop and take a break.
This time around the one difference is I used my very expired bottle of oral solution from 2022 which expired July 2023. So instead of the regular amount that worked well in the past 0.25 - 0.75 mg per day, I had to take 2-3 mg per day for a similar effect. It took a week to kick in again and this time it ramped up more slowly instead of the last two times where after a week or so of feeling nothing it would suddenly kick in. I read that unlike pills, oral solution/suspension really does go bad after having it open 6 months and definitely by the expiry date.
I’m waiting for a fresh oral solution to come hopefully next week and will report back if expiration and weak solution was indeed the reason for a difference this time or if it’s my body not responding to lower doses anymore. Don’t know that yet.
I don’t know why I’m in the subset of people where it works each time after a break. During each cycle it works the best in the beginning and then slowly loses efficacy over a few months until I feel it’s not helping enough anymore and then I stop and take a break.
This time around the one difference is I used my very expired bottle of oral solution from 2022 which expired July 2023. So instead of the regular amount that worked well in the past 0.25 - 0.75 mg per day, I had to take 2-3 mg per day for a similar effect. It took a week to kick in again and this time it ramped up more slowly instead of the last two times where after a week or so of feeling nothing it would suddenly kick in. I read that unlike pills, oral solution/suspension really does go bad after having it open 6 months and definitely by the expiry date.
I’m waiting for a fresh oral solution to come hopefully next week and will report back if expiration and weak solution was indeed the reason for a difference this time or if it’s my body not responding to lower doses anymore. Don’t know that yet.
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This time around I am not going to take it for months, because while I have no idea if it’s covering up symptoms or actually providing symptom relief, I don’t want to possibly cause any damage. I’m only going to take it for a month and have a little vacation now that I can move around and drive and be social again.
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Judee
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Long Haul Mono
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I've accepted the fact that there is no cure for what I have; only management (as best as possible).
As mentioned earlier, I'll need to discuss with the GP before possibly restarting. I'm not sure what effect it should have. Hopefully it will help with the interstate move, ie just being able to sweep/mop/vacuum the floor prior to house sale inspection would be a good start.
This interstate move seems unrealistic, but I have no other choice now.
A question for anyone who’s tried brexpiprazole (Rexulti) instead of Abilify and it also worked for your ME symptoms. Rexulti is supposed to be less activating, did you notice this? I’m wondering if a less activating antipsychotic would last longer for me than Abilify before wearing out.
SlamDancin
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@leokitten Hey not exactly but I’m being trialed on Cariprazine, a D3 preferring antipsychotic. I’m being given a full antipsychotic dose, so D3 receptor occupancy will be much higher than Abilify, but it’s D2 receptor (main target of Abilify) occupancy is much lower, so it may be comparable even at my dose to low dose Abilify. So far, it’s been 100% side effects, insomnia being the most noticeable.
How long have you been on it? Also, why the full schizophrenia dose when you don’t have schizophrenia?
SlamDancin
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About 5 or so days. It’s a long and off topic story for this thread but it can be used for non-schizophrenic psychoses or treatment resistant depression. I don’t believe I am having any of this but I did have psychosis from overusing stimulants a few years back (it was a rare feeling of being able to suppress the fatigue that made me misuse them) that has some people in my life thinking I may be having some sort of continuing psychosis. I think that’s all I should say about that. But yes because I am quite sure I’m not having any of that, but im coerced to take the drug because I do not have financial independence, and I’m pretty scared that I will have nearly exclusively side effects from this drug. Im praying everyday that somehow there might be a positive effect on my CFS through the drugs’ unique action on dopamine receptors.
SlamDancin
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This is according to selfdecode.com;
The DRD3 gene encodes dopamine receptor D3, a receptor that is activated by the chemical messenger (neurotransmitter) dopamine [R].
Among its many roles, dopamine is involved in regulating the sleep-wake cycle. While activation of certain types of dopamine receptors (such as dopamine receptor D1) has been shown to promote alertness and arousal, preliminary research has reported that dopamine receptor D3 activation may induce sleepiness [R, R, R].
Indeed, mice that lack dopamine receptor D3 have been observed to be hyperactive, suggesting that dopamine receptor D3 is necessary for suppressing active behaviors such as wakefulness [R].
A variant of DRD3 has been associated with chronic fatigue syndrome, an illness characterized by prolonged low energy. This variant may increase the sensitivity or production of dopamine receptor D3, which may result in excessive fatigue when activated by dopamine [R].
Cariprazine being a potent D3 partial agonist is supposedly able to block overactive D3 receptor. This is why I asked for Cariprazine over Abilify or any other antipsychs that my psychiatrists would have wanted to prescribe
The DRD3 gene encodes dopamine receptor D3, a receptor that is activated by the chemical messenger (neurotransmitter) dopamine [R].
Among its many roles, dopamine is involved in regulating the sleep-wake cycle. While activation of certain types of dopamine receptors (such as dopamine receptor D1) has been shown to promote alertness and arousal, preliminary research has reported that dopamine receptor D3 activation may induce sleepiness [R, R, R].
Indeed, mice that lack dopamine receptor D3 have been observed to be hyperactive, suggesting that dopamine receptor D3 is necessary for suppressing active behaviors such as wakefulness [R].
A variant of DRD3 has been associated with chronic fatigue syndrome, an illness characterized by prolonged low energy. This variant may increase the sensitivity or production of dopamine receptor D3, which may result in excessive fatigue when activated by dopamine [R].
Cariprazine being a potent D3 partial agonist is supposedly able to block overactive D3 receptor. This is why I asked for Cariprazine over Abilify or any other antipsychs that my psychiatrists would have wanted to prescribe