Aripiprazole - Abilify

Wits_End said:
My definition of "stimulating" includes something which encourages/tempts you to be more physically active, BTW.
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To me this definition doesn’t make a lot of sense. So effectively any treatment that significantly reduces ME symptoms would be stimulating, because the symptoms of the disease itself and their severity force you to be less physically and mentally active, less functional, and therefore any reduction in said symptoms would be stimulating because you are now getting some relief from that force?

At least in my case, the reason I wasn’t able to do anything before but suffer in bed is because the symptoms were constant and at a very debilitating level, including the worsening of symptoms (PEM) after trying to do anything other than stay in bed almost the entire day.

But when I take a treatment which lifts the veil quite a bit, makes the symptoms significantly less debilitating on a consistent basis, and when I exert some mentally and physically (compared to before) I don’t get any PEM, is that stimulating? I don’t think so.

With this illness it’s that constant debilitating level of physical symptoms and PEM whenever you try and exert that are the huge boulder on your back preventing you from functioning. If a treatment makes that boulder on your back significantly smaller and you can function better I wouldn’t consider that stimulating.
 
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This is a good point, I would agree something stimulating is not necessarily a bad thing if it helps to reduce brain for and increase physical activity. Coffee is a bit stimulating and I sometimes find it useful when I need to perform.

The issue that often comes up with stimulating drugs is that the effect is temporary and the payback comes later. In other words they get you to do more things, but the crash hits you even harder later. This is something I have noticed with several antidepressants, I typically get a couple of days of increased "drive", but the effect is very short-lived.

Abilify might work in a bit different way, it's a drug I have taken an interest in, although based on reports it also seems to stop working for many people.
 
My view on coffee or stimulants generally is informed by my experience. I managed to push myself to keep working for probably 5 years by having expresso coffee from the canteen at work or train stations when travelling. I felt pretty terrible but the coffee made me high enough to push through. At that time I was undiagnosed with ME I thought I was doing the right thing. However I had increasingly worse difficulty sleeping. I needed to keep working to pay the mortgage on my house but In retrospect I think if I had known what was wrong with me I would have done things differently and if I had given myself permission to be off work at that time I may have been able to continue working part time instead of having to retire. For anyone at the milder end of ME I suggest that there’s a risk of stimulant use pushing ME to a higher level of severity.

However I am not bedbound which is a very different scenario with different judgments.
 
Are members here following medical advice from testimonials rather than consulting with their GP? Is this the formula most are following?
 
Mij said:
Are members here following medical advice from testimonials rather than consulting with their GP? Is this the formula most are following?
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What influences most is the Stanford study. My GP prescribes along the lines outlined there. Start with 0,25mg per day, and eventually going upwards if wanted/needed after a few weeks. I have recently upped to 0,75mg, want to see if I can improve more. I have improvement, feeling better, but am still in bed a big part of the day.
 
@benji

I misspelled. Tweak to make usually small adjustments in or to tweak the controls especially: fine-tune.

How does a GP 'trust' their patients judgement on prescribed medication? :confused: I'm a bit confused by this.
 
I can say/write, “I am going up a little, because I want to see if I can improve more” and also how I am doing on the dose I do and when she doesn’t protest I take that as a aprovement. We’ve both read the study.
Sorry for all the editing, I have used my mental energy for the day it seems. A good show that even if Abilify helps, that’s not enough for me to be very clear strait away. At least not yet.
 
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Ditto to what @benji said. My ME doc (Levine) knows the Stanford protocol and paper well and we following the dose ranges described there. That being said I'm still on 0.5 mg now for 4 weeks (and 0.25 mg for a while before that). Could go higher and ME doc would be supportive, but don't see the need right now as 0.5 mg is just fine.
 
Mij said:
@benji

I misspelled. Tweak to make usually small adjustments in or to tweak the controls especially: fine-tune.

How does a GP 'trust' their patients judgement on prescribed medication? :confused: I'm a bit confused by this.
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Since there is no standard dosage for Abilify in ME/CFS or any low-dose protocol for Abilify, frankly I don't think it makes much difference if a GP lets the patient "tweak" the dosage or if you go by the anecdotal evidence and use something like 0.5 mg. I have actually found I cannot tolerate many medications I trialed at normal dosage meant for other conditions, so from safety aspect as long as the tweaking is done in the direction of reducing the dosage, I think it's possibly even safer than using an experimental drug at some poorly defined set dosage.
 
dreampop said:
Anyone know how did abilify + celebrex pan out, iirc ppl were saying that might avoid tolerance?
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I don't think anyone truly knows if there is any synergistic effect or not, without research pretty much impossible to know. Only thing known is celecoxib does somewhat increase aripiprazole plasma concentration due to moderate liver interaction. I'm taking etoricoxib instead of celecoxib as etoricoxib has far lower risk of GI issues (over 100x more selective for COX-2 compared to celecoxib)
 
Hi everyone - I’m at the 1 month mark since I went to Abilify 0.5 mg. Things are going really great, I feel even better than when I posted my previous update.

I stay housebound on purpose to keep my physical and mental exertion in check, as well as not trying to do that much in my apartment. But life is really another universe from where I was a month ago. As you can probably tell since I haven’t been posting much, I am catching up a bit on life now (in my apartment) and am not chained to my bed like a zombie. I’m am spending time doing hobbies that I haven’t been able to do in such a long time that I can’t remember. Things like listening to music! (which would give me PEM if I listened to more than a few minutes before)

I haven’t gotten PEM or any other random symptom worsening or fluctuation. As I wrote before, I still keenly know and feel I have ME, though compared to my last update I feel it’s continued to feel more in the background and manageable . I know the improvements will likely stabilize at some time, but I feel currently there’s no need to increase from 0.5 mg.

Also, I’ve continued to experience no side effects.
 
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Thanks for the update, @leokitten. Looking good!

I am not stable yet. Some days are as bad as before Abilify, and some days are very much better. Maybe I am messing too much with dose-changing. I have been on 0,75mg for some days and also experienced this instability. Now I am going to be patient for some time, not changing anything.
I have huge problems with sleep, taking a lot of medication for it. Abilify have helped that, consistently, and bigger dose Abilify, better help. Now I have no problem being within reasonable limits of sleep medication, and that is great. I hoped that would happen, one of the reasons for trying Abilify.
 
benji said:
I have huge problems with sleep, taking a lot of medication for it. Abilify have helped that, consistently, and bigger dose Abilify, better help. Now I have no problem being within reasonable limits of sleep medication, and that is great. I hoped that would happen, one of the reasons for trying Abilify.
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I also have very significant ME related insomnia and sleep issues. Abilify has helped with the sleep disturbances but not with getting me tired at night and able to fall asleep. I also take and have to alternate through a few different sleep meds. I wish Abilify helped with that but alas not with insomnia, though at least it hasn’t made it worse.
 
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leokitten said:
I also have very significant ME related insomnia and sleep issues. Abilify has helped with the sleep disturbances but not with getting me tired at night and able to fall asleep. I also take and have to alternate through a few different meds. I wish Abilify helped with that but alas not with insomnia, though at least it hasn’t made it worse.
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To add to this, I would say even though I still have ME insomnia and some sleep disturbances, before Abilify after a bad night I would wake up feeling like I was hit by an 18 wheeler, poisoned, and shattered with PEM - day totally ruined and hoping just to go back to sleep to recover. But now after a bad night, I feel a bit unwell for only a few minutes but then it just kind of goes away or is far reduced from before. Do the other Abilify responders know what I mean?
 
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leokitten said:
Sorry to add to this, I would say even though I still have ME insomnia and some sleep disturbances, before Abilify after a bad night I would wake up feeling like I was hit by an 18 wheeler, poisoned, and shattered with PEM - day totally ruined and hoping just to go back to sleep to recover. But now after a bad night, I feel a bit unwell for only a few minutes but then it just kind of goes away or is far reduced from before. Do the other Abilify responders know what I mean?
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Yeah, I know the feeling. Sleeping is really really essential for not ruining completely the day after. Thats why I in addition to Sarotex 75mg, the most my GP would give, have had painkillers and some grams of melatonin, and that luckily has helped enough. I have tried other medications like valkergan and others, nothing else than Sarotex helps. After Ability, the Sarotex is enougn. I shall even try to cut a tablet soon.
But on how I feel the day after sleep-problems I suspect is quite crap, still.
What you describe is my reaction on KD. Didn’t help sleep, but was ok the day after anyway.

I have some other thoughts, but have to wait a bit to formulate them. About quetiapin, that also is used as sleep aid and is the same type of medicine as Abilify,
 
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benji said:
I have some other thoughts, but have to wait a bit to formulate them. About quetiapin, that also is used as sleep aid and is the same type of medicine as Abilify,
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There is this other ME patient that seems to resemble me in the sleep difficulties, she too takes a lot of Sarotex. Although her doctor set the limit on 50mg, and to add with quetiapin 25 or 50mg when she was “desperate”. Quetiapin is also one of the 2nd generation antipsychotics, and the lowest pill is on 25mg. Which might be comparable to the 5mg Abilify tablet, because of the build-up ot Abilify due to the long half-life. So, it is quite astonishing I think that she got prescribed that, when we are lurking around small doses of under 1mg Abilify. And that it helps.
There’s has been an article though in Norwegian doc’s magazine that Quetiapin shouldn’t be used as sleep medication due to side effects.

However this article maybe explains it, that Abilify has other uses in such small doses.
https://www.healthrising.org/blog/2...uVOu-_u50g4DYii5uomex1ewYWx0-BK9UdSlKPbl3M4yI
 
benji said:
There’s has been an article though in Norwegian doc’s magazine that Quetiapin shouldn’t be used as sleep medication due to side effects.
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Yes, I believe I read too that doctors are not recommending quetiapine as a sleep aid anymore because of the fairly poor risk/benefit profile.
 
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