Abilify- Stanford Clinic Patients

[Hoosierfans]

Yeah, this seems pretty important to try and get a figure on. Even if there's a rudimentary survey on here or on healthrising. I thought it was the opposite, that only ~5% did NOT have it poop out and the overwelling majority lost benefits. Partly why I never bothered looking into Abilify.

So we do have two polls on Abilify here that I created a few months back. There should be a way to link them here but I’m not that savvy lol. But I will bump them up so that they hopefully are seen by more folks.

 

[leokitten]

Another Abilify review that came out a couple years after that other review I posted (https://forums.phoenixrising.me/threads/abilify-stanford-clinic-patients.62807/page-8#post-2300256)

Aripiprazole, A Drug that Displays Partial Agonism and Functional
Selectivity

 

[Martin aka paused||M.E.]

That may provide new insides how to overcome tolerance if we could sensetize this serotonin receptors

 

[leokitten]

What I keep thinking about is why do many pwME develop a tolerance to the effects of Abilify on ME so quickly when, for other Abilify indications, this normally doesn’t happen or takes years to happen?

Why are our dopamine and serotonin receptors reacting so differently? It seems strange to me that in this aspect why would we be any different than any other group? Could it be like @sb4 mentioned and ME is reacting to put back into a low-energy use state?

 

[Martin aka paused||M.E.]

What I keep thinking about is why do many pwME develop a tolerance to the effects of Abilify on ME so quickly when, for other Abilify indications, this normally doesn’t happen or takes years to happen?

Why are our dopamine and serotonin receptors reacting so differently? It seems strange to me that in this aspect why would we be any different than any other group? Could it be like @sb4 mentioned and ME is reacting to put back into a low-energy use state?

Maybe the whole effect isn't dopamine-related. If you crawl the internet you find that those who are on ADHD drugs for example only have to stop for a week or two. Serotonin seems to need much longer to sensitize again (or will never do). I for example don’t think that after for months neuronalisation happens like with benzo abuse (I struggle with benzo tolerance now. Congrats ). Dr. Phair mentioned in his thread a year ago or so that he thinks it’s not dopamine but 5-HTP effects (which would fit better to that metabolic trap theory from my personal understanding).

 

[leokitten]

Maybe the whole effect isn't dopamine-related. If you crawl the internet you find that those who are on ADHD drugs for example only have to stop for a week or two. Serotonin seems to need much longer to sensitize again (or will never do). I for example don’t think that after for months neuronalisation happens like with benzo abuse (I struggle with benzo tolerance now. Congrats ). Dr. Phair mentioned in his thread a year ago or so that he thinks it’s not dopamine but 5-HTP effects (which would fit better to that metabolic trap theory from my personal understanding).

That's generally what I'm thinking too, that it cannot be dopamine receptor tolerance so fast, it could be Abilify's effects on the serotonin system causing some of the symptom improvements and unfortunately the tolerance, though to me again a big issue is that people on antidepressants also do not generally experience tolerance/poop-out for a very long time (years) and it takes 2 months for SSRI/SNRI antidepressants to even fully start working.

 

[nryanh94]

For everyone that has tried abilify I have a few questions if you don’t mind:

1. how long did it take to notice benefits for you?

2. Did you have the issue with weight gain?

3. if you did have the issue with weight gain is their anyway to counteract this? Diabetes/obesity runs in my family so that is a concern on my mind as I’ve managed to stay somewhat normal weight in spite of not being able to exercise

 

[leokitten]

1. how long did it take to notice benefits for you?

I was on 0.25 mg for 1.5 weeks and didn't notice anything, then raised to 0.5 mg and 1 week after that most ME symptoms started melting away fast.

2. Did you have the issue with weight gain?

Only the first few weeks did I get more hungry and likely have some minor weight gain, but then that normalized and went away and because I could do so much more I've actually lost weight since starting Abilify. Please note I'm taking around 0.65 mg / day now so this could be a factor why weight gain isn't an issue.

3. if you did have the issue with weight gain is their anyway to counteract this? Diabetes/obesity runs in my family so that is a concern on my mind as I’ve managed to stay somewhat normal weight in spite of not being able to exercise

Be patient and keep the dosage a low as possible to achieve efficacy. It takes 2 weeks at a dosage to determine how much it will improve symptoms, so ideally one would start really low, e.g. 0.25 mg, wait 2 weeks on that dosage, eval improvements (or not), if not enough go up by 0.25 to 0.5 mg, wait 2 weeks and eval improvements, and so on.

I've been on Abilify for 4 months as of yesterday and still have remained at only 0.65 mg, because it works really well for me at this dosage, the improvements are the same since they plateaued about 1 1/2 months in to it.

Also something very important is to not think that if you get great improvements at X dosage it will be even better at X + Y dosage, Abilify doesn't seem to work like that, especially in ME. If it's going to work for you each individual appears to have a "sweet spot" where the ratio of benefits to side effects are best and going any higher seems to not produce any more benefit but only increased risk of side effects.

Finally, IMHO who cares about a little weight gain ME is f---ing HORRIBLE! If the Supreme Being made a deal with me and said you would weigh 2x now but your ME would be totally gone I would take that deal without a second thought!

 

[WantedAlive]

Hey @Boba I see you're using doxepin for sleep, as am I. How are you tolerating Abilify after first couple of weeks? Abilify was beneficial for me but I had some tolerance issues and I had to discontinue. I'm sure it's unlikely doxepin's the problem, but they will compete on 5H2A receptors, and I'm trying to understand the side effects I'm getting.

I got benefit fairly instantly on 0.25mg, but gradually over the weeks I got muscle ache and cramp in forearms and fingers, but nowhere else. This got worse as my dose went up and from continuous use. I'm sure my fine motor control was mildly affected also. I'm trying to figure out what might cause this, if anyone has any insight? I just assume it might be a tolerance issue, or maybe the drug quality the compound pharmacy uses?

Since I discontinued, I've tried higher dose CBD oil which progressively worked after a week, but now that ALSO has 'pooped out' after about 3 weeks! I had the same experience with Abilify, after 3-4 weeks the drug started to work against me, then once I stopped it kicked in again, but when I resumed dosing within a week later at a lower dose I deteriorated again. Aaaagh! I really can't make sense of it. I'd begun to think this disease is refractory to treatment, but clearly with a few that's not the case. I might have to try it again, this time just stay at 0.25, but these side effects do bother me.

@nryanh94 The dose / benefit seems to be different for everyone. For me it was near instant at 0.25mg, for others they go up to 1mg before they notice anything.

 

[leokitten]

Hey @Boba I see you're using doxepin for sleep, as am I. How are you tolerating Abilify after first couple of weeks? Abilify was beneficial for me but I had some tolerance issues and I had to discontinue. I'm sure it's unlikely doxepin's the problem, but they will compete on 5H2A receptors, and I'm trying to understand the side effects I'm getting.

I personally would avoid centrally acting antihistamines such as doxepin, diphenhydramine, and other similar drugs, for example like hydroxyzine, when taking Abilify.

I was taking hydroxyzine for my psoriasis (itching) and also for ME sleep issues for a long time but quickly stopped after starting Abilify because I noticed it definitely blunts the effects of Abilify by a lot (and possibly also blunts effects of moclobemide).

These drugs help knock you out at night but make the next day really groggy and fatigue inducing and Abilify’s effects are really counteracted. Once I stopped I realized this.

 

[leokitten]

I personally would centrally acting antihistamines such as doxepin, diphenhydramine, and other similar drugs, for example like hydroxyzine, when taking Abilify.

I was taking hydroxyzine for my psoriasis (itching) and also for ME sleep issues for a long time but quickly stopped after starting Abilify because I noticed it definitely blunts the effects of Abilify by a lot (and possibly also moclobemide).

These drugs help knock you out at night but make the next day really groggy and fatigue inducing and Abilify’s effects are really counteracted. Once I stopped I realized this.

My guess here is I believe that centrally acting H1 and H2 antagonists decrease dopamine, serotonin, and norepinephrine neurotransmission in the brain, since increased histamine does the reverse and increases neurotransmission of these three neurotransmitters.

 

[Boba]

Hey @Boba I see you're using doxepin for sleep, as am I. How are you tolerating Abilify after first couple of weeks? Abilify was beneficial for me but I had some tolerance issues and I had to discontinue. I'm sure it's unlikely doxepin's the problem, but they will compete on 5H2A receptors, and I'm trying to understand the side effects I'm getting.

@WantedAlive One thing I noticed are heart palpitations starting at day 5. I skipped Doxepin for one night to see if it changed. But it didn’t. One reason could be my fluid intake which was pretty poor. I‘m at 0,25 mg and got an increase of energy Arcturus 2nd day. I will reduce Abilify to 0,125 to see what happens.

 

[leokitten]

My guess here is I believe that centrally acting H1 and H2 antagonists decrease dopamine, serotonin, and norepinephrine neurotransmission in the brain, since increased histamine does the reverse and increases neurotransmission of these three neurotransmitters.

Did a quick literature review and yes, the histamine neurotransmitter system innervates and interacts with the serotinergic and dopaminergic systems and activation of H1 receptors results in increases in release of serotonin and dopamine and increases in respective neurotransmission. So intuitively H1 antagonism would result in the opposite.

Just thought of an idea and no idea if it would work… but maybe for those who’ve gotten Abilify tolerance and are taking a hiatus, would occasional administration of first-generation centrally acting H1 antihistamines speed up the time it takes to reset dopamine receptors to baseline so you can restart Abilify again?

I wonder since taking this will reduce synaptic dopamine release and could speed up the process removing tolerance? If the dopamine receptor poop out hypothesis is true this might help.

I would prefer hydroxyzine over other 1st gen antihistamines like doxepin and diphenhydramine because hydroxyzine doesn’t have significant anticholinergic effects while the others do, and chronic use is correlated with increased dementia risk.

 

[leokitten]

I wanted to give an update and more info, but I having something happening somewhat often, like today, I am getting a extra boost in ME improvements more than other days, to the level I felt before plateauing on Abilify. I can now feel suddenly for a day like I have mild ME and feel relatively great. Every other day is very good but improvement more to mild-moderate level.

Not sure what is going on, I’m taking the same meds every day as part of my Abilify regimen. My current regimen:

Abilify 0.65 mg
Moclobemide 300 mg
LDN 4.5 mg
Etoricoxib 30 mg or 81 mg aspirin (lately more aspirin instead)
Famotidine 10 mg (for my occasional nightly mast cell gut irritation and itching)
Different sleep meds that I cycle through (which I’ve been taking same meds for years before Abilify so don’t think has much to do with what’s happening compared to new regimen above)

 

[Martin aka paused||M.E.]

I wanted to give an update and more info, but I having something happening somewhat often, like today, I am getting a extra boost in ME improvements more than other days, to the level I felt before plateauing on Abilify. I can now feel suddenly for a day like I have mild ME and feel relatively great. Every other day is very good but improvement more to mild-moderate level.

Not sure what is going on, I’m taking the same meds every day as part of my Abilify regimen. My current regimen:

Abilify 0.65 mg
Moclobemide 300 mg
LDN 4.5 mg
Etoricoxib 30 mg or 81 mg aspirin (lately more aspirin instead)
Famotidine 10 mg (for my occasional nightly mast cell gut irritation and itching)
Different sleep meds that I cycle through (which I’ve been taking same meds for years before Abilify so don’t think has much to do with what’s happening compared to new regimen above)

I had the same fluctuations

 

[leokitten]

I had the same fluctuations

To be clear though I’m never fluctuating into the bad direction, that’s what I find surprising. It’s either the baseline constant improvement level days from Abilify or these somewhat often even better days.

 

[Martin aka paused||M.E.]

To be clear though I’m never fluctuating into the bad direction, that’s what I find surprising. It’s either the baseline constant improvement level days from Abilify or these somewhat often even better days.

Yes. That's what I told you months ago. And that after some time I didn't get crash anymore

 

[Marylib]

Exactly ! He did the same to me. I said abilify has stopped working and he told me very bluntly that : " no ! It's working ! Keep taking it! It's an anti-inflammatory!"

I find him to be less informed than the average person on PR. I dropped him after that visit.

That is pretty strange for a clinician to say to a patient about an experiment.

 

[leokitten]

That is pretty strange for a clinician to say to a patient about an experiment.

Sorry to say but it's the truth, a doctor who is saying unsupported nonsense like this, not believing patients when they say a drug is clearly not working anymore, and pushing them to continue with treatment regardless should go under medical tribunal by the licensing board and their peers and deal with the consequences. I'm not saying their license should immediately be revoked, but they have to learn this is clearly borderline malpractice and they need to stop.

 

[Martin aka paused||M.E.]

Sorry to say but it's the truth, a doctor who is saying unsupported nonsense like this, not believing patients when they say a drug is clearly not working anymore, and pushing them to continue with treatment regardless should go under medical tribunal by the licensing board and their peers and deal with the consequences. I'm not saying their license should immediately be revoked, but they have to learn this is clearly borderline malpractice and they need to stop.

And it's not logical.. If it were anti-inflammatory it wouldn't be the effect that made him better so he has no reason to take it and risk side effects