Abilify- Stanford Clinic Patients

[Rufous McKinney]

Oh, what brand/product do you use of CBD lotion?

sorry I missed this....

I was using a brand called Plain Jane...a basic nice unscented body lotion with CBD in it. I don' t have the box that describes it any longer.

So then: I've not been able to get that again- the store says they don't have it.

I think there are issues at the local dispensaries with products being available consistently.

So then my husband brought back: Papa and Barkley. RELEAF BALM..(for aches and pains it says).

This is more a sticky balm with eucalyptus and tea tree. So I'd prefer the cream because I use it near by eyes and nose. Beeswax base.

This product is a 3:1 CBD:THC. Another sample we got was more THC and less CBD so I've been using that.

 

[Hip]

I'm currently doing a trial Methylphenidate/Famotidine to see if I can increase Dopamine in the mesolimbic and at the same time attenuate the adrenergic tone induced by methylphenidate.

I had poor results with famotidine: it made me extremely vague mentally. See this post.

 

[pattismith]

I had poor results with famotidine: it made me extremely vague mentally. See this post.

This doesn't surprise me, I have an headache wiith Famotidine and can't tolerate it alone. But the association with methylphenidate seems to fix this issue (my trial is only a few days old , but I consider to keep it a bit more)

 

[WantedAlive]

I've been on Abilify since April 5th, starting at 0.25, graduated in 0.25mg increments to 1mg 6 days ago.

At 0.25mg and 0.5mg I enjoyed some very mild improvement: reduction of neck and shoulder pain; a little more power and stamina, increased appetite, reduction in dyspeptic symptoms, deeper sleep (but wake early 4-5am)....all good enough to give me encouragement that this drug might be beneficial for me, so I've been keen to persevere. But at 0.75-1mg it's changing, getting worse, and I'm questioning the next direction...persevere or back off.

Side effects are minimal but they're increasing with dose. I get rather unpleasant cramping sensations in my fingers and forearms particularly with any sustained grip, like holding a full tea cup. These tend to subside a little with more prolonged use at that dose. One pleasant side effect is on first day of increased dose, my legs have an urge to be active.

So, apart from the unpleasant finger/forearm cramping, the side effects are tolerable but a little unsettling. Anyone else experience this sought of feeling or something similar?

I'm only on day 6 at 1mg, so it may improve from here but presently I've actually got weaker at this higher dose, the neck pains are back, brain fog worse, PEM worse, it's like Abilify at 1mg has aggravated my symptoms to worse than before I started. At this stage I'm inclined to back off back down to 0.5mg where I was getting some, albeit minor, relief. I'm desperate for any relief, so I was dead keen for Abilify to work and stave off being bedridden.

Anyone else experience this, and push through? The official directives suggest patience and perseverance.

 

[Hip]

Abilify is being tested to see if it may make a useful COVID treatment. This is because:

Antipsychotics modulate expression of inflammatory cytokines and inducible inflammatory enzymes.

 

[mitoMAN]

Anyone taking above 2mg Abilify and continues to have improvements? I just tried to do so and it seem I came out of a plateau

 

[Ladycreole03]

plateau

Do you think it can take me out of rolling PEM along with aggressive rest?

 

[Ladycreole03]

I've been on Abilify since April 5th, starting at 0.25, graduated in 0.25mg increments to 1mg 6 days ago.

At 0.25mg and 0.5mg I enjoyed some very mild improvement: reduction of neck and shoulder pain; a little more power and stamina, increased appetite, reduction in dyspeptic symptoms, deeper sleep (but wake early 4-5am)....all good enough to give me encouragement that this drug might be beneficial for me, so I've been keen to persevere. But at 0.75-1mg it's changing, getting worse, and I'm questioning the next direction...persevere or back off.

Side effects are minimal but they're increasing with dose. I get rather unpleasant cramping sensations in my fingers and forearms particularly with any sustained grip, like holding a full tea cup. These tend to subside a little with more prolonged use at that dose. One pleasant side effect is on first day of increased dose, my legs have an urge to be active.

So, apart from the unpleasant finger/forearm cramping, the side effects are tolerable but a little unsettling. Anyone else experience this sought of feeling or something similar?

I'm only on day 6 at 1mg, so it may improve from here but presently I've actually got weaker at this higher dose, the neck pains are back, brain fog worse, PEM worse, it's like Abilify at 1mg has aggravated my symptoms to worse than before I started. At this stage I'm inclined to back off back down to 0.5mg where I was getting some, albeit minor, relief. I'm desperate for any relief, so I was dead keen for Abilify to work and stave off being bedridden.

Anyone else experience this, and push through? The official directives suggest patience and perseverance.

Are you completely bedridden? Are you in a crash? Im soon beginning abiify.

 

[Ladycreole03]

I probably wrote it unclear.
I dont have constant excitations and orgasms. And abilify is not the cause of the problem. It does just increase the risk of having one. The last three weeks I havent had one at all. But it was extremely exhausting to control absolutely each tought all the time. I have many ice pads beside my bed to cool me down if I start feeling excitment. That works to some degree. But it makes me mentally ill!

On the other hand Abilify works quite well physically. I wouldnt be able to use my smartphone, watch tv or use a spoon otherwise...sooo it's worth the higher risk of having a crash for me.

Cheers
Marco

Thats awesome! What symptoms did Abilify help with for you? Are you bedridden?

 

[WantedAlive]

Are you completely bedridden? Are you in a crash? Im soon beginning abiify.

@Ladycreole03 Welcome to the abilify club! I'm not bedridden but totally wheelchair dependent, I can't walk 2m without distressing the body. Abilify has ended up a disappointment for me but I haven't given up yet, I may have increased the dose too aggressively to tolerate. Everyone is different. It seemed to be helpful for me initially at micro doses below 0.5mg. Others seem to have no problem above that.

So I'm about to restart and hold steady at a very low dose. You'll notice in this thread Abilify has a long half life 75hrs (just over 3 days). So you don't reach steady-state until 15+ days. For me I think there's a sweet spot I need to find and stay there for a while. I created a table of maximum steady-state levels reached by daily dose:
Daily Dose 0.125mg Max Steady State Day 15+ = 0.61mg
Daily Dose 0.25mg Max Steady State Day 15+ = 1.23mg
Daily Dose 0.50mg Max Steady State Day 15+ = 2.50mg
Daily Dose 0.75mg Max Steady State Day 15+ = 3.70mg
Daily Dose 1.00mg Max Steady State Day 15+ = 4.90mg
Daily Dose 1.50mg Max Steady State Day 15+ = 7.40mg
Daily Dose 2.00mg Max Steady State Day 15+ =9.80mg

I believe I found a beneficial steady-state level somewhere nearer 1-2mg as I went up and then as I came off. The benefit wasn't much to be excited about but I'll take anything. Dosing daily above 0.5 became detrimental for me, and the side effects of forearm and finger cramping became intolerable. I'll start again daily at 0.125mg and see how I go.

Hopefully it works easier and more effectively for you.

 

[Ladycreole03]

@Ladycreole03 Welcome to the abilify club! I'm not bedridden but totally wheelchair dependent, I can't walk 2m without distressing the body. Abilify has ended up a disappointment for me but I haven't given up yet, I may have increased the dose too aggressively to tolerate. Everyone is different. It seemed to be helpful for me initially at micro doses below 0.5mg. Others seem to have no problem above that.

So I'm about to restart and hold steady at a very low dose. You'll notice in this thread Abilify has a long half life 75hrs (just over 3 days). So you don't reach steady-state until 15+ days. For me I think there's a sweet spot I need to find and stay there for a while. I created a table of maximum steady-state levels reached by daily dose:
Daily Dose 0.125mg Max Steady State Day 15+ = 0.61mg
Daily Dose 0.25mg Max Steady State Day 15+ = 1.23mg
Daily Dose 0.50mg Max Steady State Day 15+ = 2.50mg
Daily Dose 0.75mg Max Steady State Day 15+ = 3.70mg
Daily Dose 1.00mg Max Steady State Day 15+ = 4.90mg
Daily Dose 1.50mg Max Steady State Day 15+ = 7.40mg
Daily Dose 2.00mg Max Steady State Day 15+ =9.80mg

I believe I found a beneficial steady-state level somewhere nearer 1-2mg as I went up and then as I came off. The benefit wasn't much to be excited about but I'll take anything. Dosing daily above 0.5 became detrimental for me, and the side effects of forearm and finger cramping became intolerable. I'll start again daily at 0.125mg and see how I go.

Hopefully it works easier and more effectively for you.

Im so sorry.. Thx for the welcome!
I never understand a half life lol. Im not ever sure what it means.
I hope you find your sweet spot! What benefit did you get?

 

[leokitten]

Reviva Announces Full Details of Positive Phase 2 Clinical Trial Results for Acute Schizophrenia (brilaroxazine)

• Met endpoints for safety and efficacy in 234 patients’ clinical trial with Acute Schizophrenia or Schizoaffective Disorder
• Met primary endpoint of reduction in Positive and Negative Syndrome Scale (PANSS) total score for Schizophrenia
• Mitigated positive symptoms and negative symptoms
• Improved social functioning and cognition.
• No metabolic (weight gain, elevated blood sugar, increase in lipids), no endocrine (hypothyroidism, hyperprolactinemia) side effects and no increase in suicidal ideation compared to placebo.

Reviva starting brilaroxazine phase III trial for schizophrenia in mid-2021

To me we don’t know if the reason Abilify stops working in many or most pwME after 3-4 months is because of Abilify’s known side effects on cellular metabolism and glycolysis, particularly if what is driving ME is cellular metabolic dysfunction.

It could be that after 3-4 months this eventually builds up and rears it’s ugly head within dopamine and serotonin system neurons, glial cells and mitochondria, and basically counteracts the positive stabilizing/modulating effects the drug has on these systems.

I wish we could get brilaroxazine into a small trial for ME or on compassionate use grounds, because this is the big game changer with this drug. It does not have metabolic side effects unlike all other antipsychotics, in fact it has shown so far to have mildly positive metabolic effects. So basically it works as strongly as Abilify with no metabolic side effects. Sign me up!

 

[leokitten]

@Janet Dafoe and Ron if it’s worth try to contact the founder and CEO of Reviva Pharmaceuticals Laxminarayan Bhat, Ph.D.

These guys changed one carbon atom in aripiprazole's quinolinone ring system with an oxygen atom and voila brilaroxazine (aka oxaripiprazole).

That one small change makes it have zero metabolic side effect profile and I feel if we could trial it it would help us figure out if Abilify’s metabolic side effects are the cause of its poop out after 3-4 months (also same with brexipiprazole and caripirazine as they also have metabolic side effects similar to Abilify)

 

[junkcrap50]

So I'm about to restart and hold steady at a very low dose. You'll notice in this thread Abilify has a long half life 75hrs (just over 3 days). So you don't reach steady-state until 15+ days. For me I think there's a sweet spot I need to find and stay there for a while. I created a table of maximum steady-state levels reached by daily dose:
Daily Dose 0.125mg Max Steady State Day 15+ = 0.61mg
Daily Dose 0.25mg Max Steady State Day 15+ = 1.23mg
Daily Dose 0.50mg Max Steady State Day 15+ = 2.50mg
Daily Dose 0.75mg Max Steady State Day 15+ = 3.70mg
Daily Dose 1.00mg Max Steady State Day 15+ = 4.90mg
Daily Dose 1.50mg Max Steady State Day 15+ = 7.40mg
Daily Dose 2.00mg Max Steady State Day 15+ =9.80mg

Finally! Thank you! For the life of me, I couldn't see why this approach was never taken when this thread discussed long half life and high steady states. I'm not an abilify trier and have only followed this thread loosely.

Is it b/c there's no easy/over the counter way to dose that low? Why couldn't a compounding pharmacy make a ultra-low dose?

Could even lower dosing work, below 0.61mg steady state? Would a subclinical dose, after building to steady state, slowly nudge the dopamine into balance over a longer period of time (2-6 months)? Would the anti-inflammatory effect compound over time? I don't know. LDN sort of works a similar way on a ~2 week scale.

With the nature of messing with dopamine (up/down regulating receptors) and the nature of the drug, it seems a subclinical dose over a longer period of time would be what I would try first before increasing it to levels where a more immediate effect is seen and/or to levels where other patients saw great benefits but eventually lost.

 

[jaybee00]

Daily Dose 0.125mg Max Steady State Day 15+ = 0.61mg
Daily Dose 0.25mg Max Steady State Day 15+ = 1.23mg
Daily Dose 0.50mg Max Steady State Day 15+ = 2.50mg
Daily Dose 0.75mg Max Steady State Day 15+ = 3.70mg
Daily Dose 1.00mg Max Steady State Day 15+ = 4.90mg
Daily Dose 1.50mg Max Steady State Day 15+ = 7.40mg
Daily Dose 2.00mg Max Steady State Day 15+ =9.80mg

Thanks—can you show how you calculate these numbers?

 

[WantedAlive]

Why couldn't a compounding pharmacy make a ultra-low dose?

I get my Abilify from a compounding pharmacy at 0.25mg minimum. They're not cheap though, and the smaller the dose the more excipient you get. So I'm splitting 0.25's in half which is easy enough. I may graduate to 0.25 daily, or 0.125 one day and 0.25 the next is about my tolerance level presently.

Thanks—can you show how you calculate these numbers?

The easy way, as it turns out, would be to just multiply daily dose by 4.9! But in fact I used the following methodology:

To determine the half-life degradation I use the excel formula =Dose*0.5^(Day#/3.125), where 3.125 = 75Hrs in days, and Day# = 0,1,2,3... gives you a degradation table like this below (in grey). Then you create a table of dosing like this below, in this case dosing at 0.25mg daily. Hope this helps!

 

[Thomas]

Interesting that in Jay Goldstein’s book Tuning the Brain which was written before Abilify was approved, he made mention of this drug, the drug developer, and similar compounds that he thought might be very helpful in ME/CFS and related Neurosomatic conditions (see attached screenshot) . Neurosomatic was the term Goldstein used to describe the various conditions and comorbidities found under the MECFs umbrella.

He became quite ill shortly after the book was published so I doubt he was ever well enough in recent years to follow the progress of these drugs. And as most of you know he unfortunately passed away a couple of months back.

I have not tried low dose abilify yet however I plan to within the next week or so as soon as I can speak with my prescribing physician.

Also I have not read all pages of this thread so apologies if this connection has already been established and discussed thus far. I haven’t been online for quite some time.
good luck.

 

[leokitten]

Dopamine serotonin stabilizer RP5063: A randomized, double-blind, placebo-controlled multicenter trial of safety and efficacy in exacerbation of schizophrenia or schizoaffective disorder

 

[leokitten]

Initial Clinical Experience of RP5063 Following Single Doses in Normal Healthy Volunteers and Multiple Doses in Patients with Stable Schizophrenia


Pharmacokinetics of RP5063 Following Single Doses to Normal Healthy Volunteers and Multiple Doses Over 10 Days to Stable Schizophrenic Patients

 

[leokitten]

RP5063, an atypical antipsychotic drug with a unique pharmacologic profile, improves declarative memory and psychosis in mouse models of schizophrenia