Abilify- Stanford Clinic Patients

[Andryr]

A question to those taking low dose Abilify. I started from 0.25 a while ago and currently taking 0.75 mg.
I had an improvement some time ago, still not sure it is Abilify, because about the same time I was also taking antivirals, adaptogens, Vit.C injections, marijuana (almost medical)...
I am not sure what to do next - to wean off or go for 1mg. How do I know it is time to stop Abilify?

 

[Hipsman]

@Andryr I see two options:

1) Stop Abilify and see if you get worse after few weeks. If you get worse, then it means abilify was likely working.

But you would have to be able to distinguish whether your worsening is caused by side-effects of stopping Abilify or that Abilify stopped helping.

Side-effects of stopping Abilify should stop by themselves after some time and you would be back to baseline i think.

2) Increase the dose to 2mg and see if you notice significant improvement. If there is no improvement after one or two months on 2mg, then abilify likely doesn't work and you should stop.

If you only increse to 1mg you might not notice the improvment.

 

[serafim]

unfortunately i’m not among these. after three days of good energy on just 0,25 mg I crashed quite heavily and still haven’t recovered back to baseline.

Hi @Yuno, have you recovered from that in the end?

 

[serafim]

. Then again: A crash and it stopped working.

Hi Martin, i want to start Abilify but i’m a little apprehensive. Was the crash caused by Abilify? Was it just you going back to the previous baseline or was it worse? I’m very severe and can’t afford to lose any more function

 

[serafim]

Different sleep meds that I cycle through

hi @leokitten , may i ask what sleep meds you take? i want to start LDA but one of the meds i have on rotation is Seroquel which is an antipsychotic, and i’m afraid it will interfere with LDA in some way, but i also don’t know what to replace it with. I’ve tried so many different sleep meds and most of them don’t work

 

[jaybee00]

@serafim You are probably better off posting on the FB group—more members there.

 

[Hip]

I just saw that Abilify modulates the ion channel transient receptor potential melastatin 7 (TRPM7).

TRPM7 dysfunction has been implicated in ME/CFS by Griffith University researchers, study here.

The same researchers also found TRPM3 dysfunction in ME/CFS, which may impair natural killer cell function, weakening the immune response.

 

[Sizzle]

I just saw that Abilify modulates the ion channel transient receptor potential melastatin 7 (TRPM7).

TRPM7 dysfunction has been implicated in ME/CFS by Griffith University researchers, study here.

The same researchers also found TRPM3 dysfunction in ME/CFS, which may impair natural killer cell function, weakening the immune response.

step-by-step

 

[leokitten]

hi @leokitten , may i ask what sleep meds you take? i want to start LDA but one of the meds i have on rotation is Seroquel which is an antipsychotic, and i’m afraid it will interfere with LDA in some way, but i also don’t know what to replace it with. I’ve tried so many different sleep meds and most of them don’t work

LDA is not a sleep med. Did nothing for me and did absolutely nothing for many others with ME.

For sleep I cycle between zolpidem ER, eszopiclone, tiagabine, and hydroxyzine currently. They all help and when I build up some tolerance I change to another for a while, and so on.

 

[leokitten]

LDA is not a sleep med. Did nothing for me and did absolutely nothing for many others with ME.

For sleep I cycle between zolpidem ER, eszopiclone, tiagabine, and hydroxyzine currently. They all help and when I build up some tolerance I change to another for a while, and so on.

If hydroxyzine 25-50 mg doesn’t put you out I don’t know what else will. For me it’s the strongest of them all.

 

[leokitten]

Coincidentally I started sertraline too 8 weeks ago. I had been taking moclobemide for a couple years now but it did virtually nothing for mood, depression or anxiety. Wanted to try another antidepressant to help with ME reactive depression, which was very real since I became bedridden for months again.

After 8 weeks I can say sertraline doesn’t help with ME symptoms, if I exert too much I still get PEM and will eventually crash if I keep going. Though it does seem to blunt the pain in my abdomen from ME gut issues. But it’s had a very positive effect on my mood, general anxiety due to situation, feeling of hopelessness. It took 6 weeks and going up to 100 mg to start helping and push through the constant ME symptom noise. I feel much less worried and anxious about that future which honestly in our situation is a good thing.

I was thinking about augmenting with bupropion since it’s said that sertraline and bupropion work well together. Just worried bupropion will be like other stimulating meds and simply mask the symptoms of PEM until it’s much worse and I crash harder and do damage. Sertraline by itself for me doesn’t stimulate at all which is good, it feels more anxiolytic. Any thoughts on bupropion? Does it make people worse?

Haven’t been around for a while been too ill. The mood and anxiety benefit from sertraline lasted about 4-6 weeks after going up to 100 mg and after subsequent ME crashes lost its benefits except for side effects, like making my head feel swollen and hurt and a low grade constant tinnitus, feeling as if it’s making ME chronic inflammation worse. After 3 months on it I gave it a serious trial and then switched to escitalopram. Been on that for 3 months and it has the same lack of overall benefit except side effects, minus the pressure headache which I guess was one improvement. I’m changing to fluvoxamine mow. I don’t expect anything from this trialing to help with ME symptoms, only to do something for mood and anxiety being mostly bedridden again has made me hopeless. Just want something to help with that that I can take indefinitely and doesn’t make ME symptoms worse. If this doesn’t help then giving up on it and will go go back on LDA for a third trial, I don’t know why I’ve delayed it, partly because I know from the other two times it only worked for a few months and it’s very difficult lose ability to function over again

 

[leokitten]

hi @leokitten , may i ask what sleep meds you take? i want to start LDA but one of the meds i have on rotation is Seroquel which is an antipsychotic, and i’m afraid it will interfere with LDA in some way, but i also don’t know what to replace it with. I’ve tried so many different sleep meds and most of them don’t work

Hydroxyzine 25-50mg at night as needed if that doesn’t work I’m not sure what will

 

[hmnr asg]

Haven’t been around for a while been too ill. The mood and anxiety benefit from sertraline lasted about 4-6 weeks after going up to 100 mg and after subsequent ME crashes lost its benefits except for side effects, like making my head feel swollen and hurt and a low grade constant tinnitus, feeling as if it’s making ME chronic inflammation worse. After 3 months on it I gave it a serious trial and then switched to escitalopram. Been on that for 3 months and it has the same lack of overall benefit except side effects, minus the pressure headache which I guess was one improvement. I’m changing to fluvoxamine mow. I don’t expect anything from this trialing to help with ME symptoms, only to do something for mood and anxiety being mostly bedridden again has made me hopeless. Just want something to help with that that I can take indefinitely and doesn’t make ME symptoms worse. If this doesn’t help then giving up on it and will go go back on LDA for a third trial, I don’t know why I’ve delayed it, partly because I know from the other two times it only worked for a few months and it’s very difficult lose ability to function over again

That is such a coincidence, I am switching to fluvoxamine as well! I am very scared it might have sedation as a side effect (which i cant afford).
How are you doing with fluvoxamine? is it sedative? any help with the anxiety?

 

[Judee]

Haven’t been around for a while been too ill. The mood and anxiety benefit from sertraline lasted about 4-6 weeks after going up to 100 mg and after subsequent ME crashes lost its benefits except for side effects, like making my head feel swollen and hurt and a low grade constant tinnitus, feeling as if it’s making ME chronic inflammation worse. After 3 months on it I gave it a serious trial and then switched to escitalopram. Been on that for 3 months and it has the same lack of overall benefit except side effects, minus the pressure headache which I guess was one improvement. I’m changing to fluvoxamine mow. I don’t expect anything from this trialing to help with ME symptoms, only to do something for mood and anxiety being mostly bedridden again has made me hopeless. Just want something to help with that that I can take indefinitely and doesn’t make ME symptoms worse. If this doesn’t help then giving up on it and will go go back on LDA for a third trial, I don’t know why I’ve delayed it, partly because I know from the other two times it only worked for a few months and it’s very difficult lose ability to function over again

I'm sorry you're bedridden now.

Have you seen the threads that are discussing Sodium Butyrate? @Mimicry was getting benefit from it. I wonder if that would help you. ??

Hang in there, @leokitten.

 

[leokitten]

That is such a coincidence, I am switching to fluvoxamine as well! I am very scared it might have sedation as a side effect (which i cant afford).
How are you doing with fluvoxamine? is it sedative? any help with the anxiety?

I haven’t noticed anything out of the ordinary or any benefits yet. I’ve been on 100 mg per day taken at night for only few days. No increased sedation. But everyone is different for example I had no increased GI issues from SSRIs, which supposedly is a very common symptom.

 

[gm286]

Short update to mention I am back on Abilify at a dose of 4-6mg per day. Weight gain is being offset by use of peptide tirzepatide (Mounjaro). So far I am regaining some of the beneficial effects without apparently feeling hungry and/or putting on weight. Will update within a few months if this new approach fails.

I am gaining more positive effects at 4 - 6mg than I am at 2mg. Will take 4mg in the morning and then 2mg in the evening, on an as needed basis.

 

[Murph]

Just wanted to mention thar Ron Davis has a new theory on Ablify and dopamine and BH4 which he explained in his NIH webinar the other day.

They are recruiting for a study to investigate BH4 pathways in patients. But not offering the drug Kuvan that Whitney is on, which costs upward of $100k/year in the USA ! (and $31.60 a packet in Australia).

 

[Long Haul Mono]

If hydroxyzine 25-50 mg doesn’t put you out I don’t know what else will. For me it’s the strongest of them all.

I'm aware this is a reply to an old post, but I can tell you what else will 'put you out'...
THC cannabis. It's the only thing I have used consistently/successfully each night to help with sleep. It's reduced the nocturia back down to one, but I'm still keeping watch on whether this changes for the worst again, just like prescription drugs do. Belsomra, valium, benzos, none of these work for me.

I started taking Abilify a few days ago. Each pill is 0.5mg. Starting with 1 pill, one day on one day off, increasing to a max. of 4 pills.
It's not going well. I took 4 pills today and basically I'd describe the way I feel today as rancid.
Added to that I've got this weird feeling like I'm on the brink of hyperventilation. It's kind of like a feeling of stress in the upper abdomen that comes and goes, for no apparent reason.

I'm not sure I'll continue but am also unsure if I'd be quitting too soon, although my intention with agreeing (with my GP) to take this drug was short term use only.
I'm not a believer that ME is something that could be cured/managed by drugs (Note, I don't consider THC a drug, but rather 'plant based medicine').

So, to those on Abilify, I'd be interested to hear of your experiences, particularly if (in the early days of taking it) you experienced similar symptoms.

 

[hapl808]

I started taking Abilify a few days ago. Each pill is 0.5mg. Starting with 1 pill, one day on one day off, increasing to a max. of 4 pills.

How long did you titrate from 0.5mg to 2mg?

 

[Hufsamor]

I don’t have any experience with Abilify (my doctor wouldn’t let me) but I’m currently on vortioxetine (antidepressant, not the same, I know. But it’s the closest experience I’ve got.)
In the first weeks I suffered quite a lot of side effects. It took some weeks for the side effects to subside and for the positive effects to really kick in.

I’m not sure this is a kind of medication you would go on and off. The body really needs time to adapt.
I’m also not sure whether you perhaps would be better off if you continue with one pill every other day, instead of increasing that fast?