Aripiprazole - Abilify

@Marky

I agree with some of what you're saying, but I was given a medication for ME that made me a lot worse 18 years ago, so now I'm very cautious. I was warned by an ME doctor many years ago not to 'experiment' with ME, because when we have a relapse, it lowers our baseline permanently each time.
 
An astounding thing is that the dosage for trazodone to treat depression is a maximum of 600 mg/day. I take 25 mg for sleep, it puts me out within 20 minutes for 5 1/2 hours of solid sleep. I took 50mg max once and I was dizzy for a week What would happen if I took 150 mg, 400 mg or 600 mg?! I'd be put into a coma for a week!
 
@butter.

Immunovir. Dr. Hyde and the Virologist who prescribed it for me did a small 6 wk study on CFS patients, the results showed that it increased NK cells and the patients felt less 'fatigued'. I literally couldn't walk for 3 months after taking it for only 3 weeks.
 
Chronic Fatigue Syndrome (ME/CFS) Isoprinosine Studies
Few studies have assessed Isoprinosine’s effectiveness in ME/CFS. After a small single blind, placebo-controlled trial of 16 patients in 1999 Dr.Hyde’s published study (2003) indicated that 6/10 patients improved and that their natural killer cell activity and T-helper cell numbers increased but no changes were seen in IFN-y, IL-1@, IL-10 and IL-12 levels. At the 2009 IACFS/ME conference Dr. Hone reported that Isoprinsine conferred ‘significant (clinical) improvement’ and increased NK cell functioning and reduced Epstein-Barr Virus levels in patients with reduced natural killer cell activity.

:jawdrop: it re-activated HHV6 and EBV in my case. I couldn't walk and was out of breath after walking 5 steps.
 
Mij said:
@Marky

I agree with some of what you're saying, but I was given a medication for ME that made me a lot worse 18 years ago, so now I'm very cautious. I was warned by an ME doctor many years ago not to 'experiment' with ME, because when we have a relapse, it lowers our baseline permanently each time.
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Its a concern, yes.

But so is living with this with no end in sight
 
Marky said:
It`s so frustrating being Norwegian without insurance, as its almost impossible to try anything at all here cause every GP or specialist that tries something gets investigated by the norwegian board of health supervision. Legally it is allowed with some extent of "experimental treatment", but in reality it is not a possibility as the state clams down on everyone trying to help ME-patients, and so GPs and specialists dont wanna touch us.

When I see people with insurance being able to try so much I get jealous I admit. Getting ill in the middle of studies, and before getting an insurance has put me and many others in such a shit powerless situation

Id gladly try IVIG, anti-virals, abilify, LDN etc if I had the chance. I actually tried getting IVIG for one whole year even with low immunoglobulin levels, but they`re so strict I had to leave the hospital crying in frustration. The doctor wanted to let me try it, but he had been ordered from above to stop.
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Yeah, it is what it is, your description fits perfectly the situation in Finland and probably most European countries. Off-label treatment is supposed to be a thing, but it really isn't, apart from geriatrics and psychiatry, which have different rules(?). My 90 year old grandparent was given drugs for his dizziness, I couldn't get any for my OI/POTS. One doctor here was prescribing LDN, but he lost his license a couple of years ago, now they think it's some super dangerous drug. Antivirals, no way, luckily you can buy some of them over the counter here, but I don't think they are very useful. IVIG, no chance. Abilify, probably the way to get this would be through a psychiatrist for something like depression, I'm considering going this route. Quite a few of the patients who are too sick to work here have literally been suggested by doctors to obtain a depression diagnosis as depression makes you eligible for disability allowance, while ME/CFS doesn't.
 
JES said:
Yeah, it is what it is, your description fits perfectly the situation in Finland and probably most European countries. Off-label treatment is supposed to be a thing, but it really isn't, apart from geriatrics and psychiatry, which have different rules(?). My 90 year old grandparent was given drugs for his dizziness, I couldn't get any for my OI/POTS. One doctor here was prescribing LDN, but he lost his license a couple of years ago, now they think it's some super dangerous drug. Antivirals, no way, luckily you can buy some of them over the counter here, but I don't think they are very useful. IVIG, no chance. Abilify, probably the way to get this would be through a psychiatrist for something like depression, I'm considering going this route. Quite a few of the patients who are too sick to work here have literally been suggested by doctors to obtain a depression diagnosis as depression makes you eligible for disability allowance, while ME/CFS doesn't.
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Thanks for your experience from Finland JES, interesting to read its the same.

One thing I forgot to mention when it comes to insurance, is that I dont think many of them opens up for treatment for ME anyway in Norway, I believe actually a lot of them specifically mentioned ME in the insurance document as being excluded. My understanding is that the ones u can get in the US are a lot less open and strict. This is just an assumption on what Ive seen and read however.

Interesting suggestion to get Abilify, I have considered asking for e.g. Cymbalta at my darkest moments, but ive decided that I think I will be stronger and better of mentally in the end by enduring the rough times with ME-related depression and anxiety. Not saying thats more "honorable" than testing SNRIS, but Ive had a couple of friends who committed suicidie while on them, so that has made me wary of it. Of course, the suicides might have nothing to with the SNRIS themself, but the underlying condition.

I want to wait and see how people who means to have responded to Abilify, are doing in some months though. Often with these things, you see them get a relapse later on, or stop getting an effect.

Thats weird about LDN, its super safe..
 
Jaybee00 said:
https://www.healthrising.org/blog/2...MLnQIA8qsyT4sLeboxDQR6VCWBFZ1dXvLBRZvyWndMT2Y

Celebrating Whitney Dafoe and his “Awakening” on his 37th Birthday

ABILIFY!!!
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The question becomes, if bonilla (sp?) found a patient improved taking it for some other reason, how did it get to a low-dose therapy? And what is low dose doing that higher doses aren't or might a higher dose be better? I'm not sure the second part is worth asking at this point, and it's good to hear that Stanford will do a study on it. Also worth noting the improvements people are saying are moderate, which is great, but expectations should be realistic.

There are a few supportive comments about the drug in the comments section.
 
Marky said:
Do we know why people get weight gain by anti psychotics by the way? If im gonna get fat by an treatment i need to be sure it cures me tbh :laugh:
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I thought atypical antipsychotic weight gain was attributed to the full antagonism of adrenergic alpha receptors and partial antagonism of antihistamine H1 receptors that these class of drugs typically have.
 
dreampop said:
The question becomes, if bonilla (sp?) found a patient improved taking it for some other reason, how did it get to a low-dose therapy? And what is low dose doing that higher doses aren't or might a higher dose be better?
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It is used as an add on therapy at low dose for depression. It works on dopamine system. Dopamine is implicated in all sorts of neurological diseases (parkinsons, depression, adhd, Lewy body dementia, schizophrenia).

Martin from Germany is taking 4mg, which afaik is double what Whitney is taking or what Stanford prescribe. He has gone from tube fed and bedridden to being able to stand up and eating food, and working some hours. He started at a low dose and worked up, and has combined it w Celebrex as an anti inflammatory, and LDN. https://instagram.com/paused_me?igshid=1ua52n21pccrr

I just started abilify yesterday at .25mg. I have a neurologist in Portugal who is working with me, she was able to find studies referencing the use of this class of medications in fibromyalgia so agreed to prescribe off label. She also said that 2mg is low and we can go higher if I want to. I will go slowly to get to 2mg, and report back here.

I don’t usually post here but hoping this is worth documenting. I am female early 40s severe. Am housebound, severe fatigue and PEM, spend all day in bed but can walk around house without mobility problems, do stairs a few times a day if needed, 800 — 1800 steps a day around house, pots, bad cognitive disfunction, sensory overstimulation w light and sound.
 
It’s clear to all of us suffering with ME that the underlying disease pathology has very significant neurological effects and even some neuropsychiatric symptoms too (there are many neurological and immune system diseases/disorders that have some neuropsychiatric effects, we shouldn’t be afraid to also say that about ME too even though we know it is a physiological disorder)

One effect could be significant dysregulation of various neurotransmitters or dysregulation of neuronal firing and this might contribute to some symptoms and Abilify might help with this dysregulation in some people.

But as someone pointed out Naviaux saying, this is symptomatic treatment and likely isn’t disease modifying or giving us any insight towards the core pathology of ME. I do hope though it continues to work in those people who are taking it and have seen a benefit.

What I would like to see is in those who are taking Abilify is if it consistently helps with PEM or other important symptoms after they increased exertion and that these effects continue over time. The problem with ME is empirical treatments available so far show no symptom improvement at all or they only seem to improve some symptoms for a short time before becoming useless.
 
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In this PR thread discussing some preliminary research work from the James Neuroimaging Lab at Stanford where they used their TSPO-PET/MRI technique and found increased neuroinflammation in the basal ganglia of ME/CFS patients compared to matched healthy controls.

Maybe Abilify helps here and not necessarily by decreasing neuroinflammation as there is no real evidence that it does, but it could be that neuroinflammation here causes dysregulation of neuronal firing or neurotransmitters in the basal ganglia and Abilify might help counteract some of the downstream effects.

I also read in research discussing immune dysfunction in schizophrenia that uncontrolled microglial activation, release of pro-inflammatory cytokines, and resultant neuroinflammation can result in neurotransmitter dysregulation. So this hypothesis about Abilify might make sense, not that it’s doing anything about ME-related neuroinflammation, but that it’s helping in some way with neurotransmitter dysregulation in some patients.

But that being said I want to see if it works for these patients long term and quantitatively by how much, eg steps, increased exertion and reduced PEM, etc.

Neuroinflammation and neuroimmune basis for schizophrenia:

Neuroinflammation and Schizophrenia

Neuroinflammation in Schizophrenia: A Critical Review and The Future
 
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leokitten said:
But as someone pointed out Naviaux saying, this is symptomatic treatment and likely isn’t disease modifying or giving us any insight towards the core pathology of ME. I do hope though it continues to work in those people who are taking it and have seen a benefit.
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If it works for some of us, might indicate that there is a population of ME patients where the dopamine system is a large player in the pathology. This could give a direction to look further in research. For example, to do DATSCAN imaging of brains (a type of SPECT imaging) to see dopamine receptor activity.

Good to point out that they don’t actually fully understand the mechanism of action of abilify in schizophrenia either. It appears to be both an agonist and antagonist of dopamine at different receptors, and this has downstream effects on serotonin I think too.
 
Marky said:
It`s so frustrating being Norwegian without insurance, as its almost impossible to try anything at all here cause every GP or specialist that tries something gets investigated by the norwegian board of health supervision. Legally it is allowed with some extent of "experimental treatment", but in reality it is not a possibility as the state clams down on everyone trying to help ME-patients, and so GPs and specialists dont wanna touch us.

When I see people with insurance being able to try so much I get jealous I admit. Getting ill in the middle of studies, and before getting an insurance has put me and many others in such a shit powerless situation

Id gladly try IVIG, anti-virals, abilify, LDN etc if I had the chance. I actually tried getting IVIG for one whole year even with low immunoglobulin levels, but they`re so strict I had to leave the hospital crying in frustration. The doctor wanted to let me try it, but he had been ordered from above to stop.
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i didn’t know the rules were this strict in Norway!
I have the same thing, I have no problems trying things out. Yes, it has a risk, but until now I have never had an adverse reaction and I’ve mostly stayed on the safe sides wit medications.
Slowly, but surely, I have gained a lot of functionality because of LDN, gammaglobulines, antibiotics and now disulfiram. The last is supposed to work on lyme, but interesting enough also works on dopamine. I am stopping the medication now, so we will see if the effect was just a dopamine reaction of the medication, or that something has changed.
 
There have been several reports of Celebrex taken with Abilify, supposedly for a synergistic purpose.

It may be worth conducting a study on Celebrex for symptom relief in me/cfs as well. I noted a while ago, Pridgen was studying this with an antiviral in Fibro with poorly controlled studies (Celebrex was not a seperated arm), and it occurs to me now that Celebrex may have accounted for any improvements in that condition.

Just some rambling thoughts.
 
leokitten said:
It’s clear to all of us suffering with ME that the underlying disease pathology has very significant neurological effects and even some neuropsychiatric symptoms too (there are many neurological and immune system diseases/disorders that have some neuropsychiatric effects, we shouldn’t be afraid to also say that about ME too even though we know it is a physiological disorder)

One effect could be significant dysregulation of various neurotransmitters or dysregulation of neuronal firing and this might contribute to some symptoms and Abilify might help with this dysregulation in some people.

But as someone pointed out Naviaux saying, this is symptomatic treatment and likely isn’t disease modifying or giving us any insight towards the core pathology of ME. I do hope though it continues to work in those people who are taking it and have seen a benefit.

What I would like to see is in those who are taking Abilify is if it consistently helps with PEM or other important symptoms after they increased exertion and that these effects continue over time. The problem with ME is empirical treatments available so far show no symptom improvement at all or they only seem to improve some symptoms for a short time before becoming useless.
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I quite agree with your points LeokItten.
The other thing I wonder about is the interplay between Abilify and Klonopin, another psychiatric drug. Many ME folks in the usa and canada are on Klonopin. They have been on it for years, and have trouble getting off it, because it is so addictive. Plus, there has been short term memory loss with lengthy use of Klonopin.
The tragedy of ME is that the lives of folks is so extreme in its severity that they try all sorts of things, and you just never know what the long term effects are going to be.
I am always trying to put my brakes on my rage that so little is being done for this illness, and really when you think of it, so few researchers are on it, even though those who are there work hard.
The real key is to determine what the heck is wrong in the body.

I recently spoke with a CFS/ME doctor who stated that he didn't think an answer would be found, because he said, there are multiple things wrong in the body for a host of reasons. I somehow cannot agree, having watched this illness. Somewhere in the body, there is some problem. Why cant they find it.
 
Perrier said:
The other thing I wonder about is the interplay between Abilify and Klonopin, another psychiatric drug. Many ME folks in the usa and canada are on Klonopin. They have been on it for years, and have trouble getting off it, because it is so addictive. Plus, there has been short term memory loss with lengthy use of Klonopin.
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Klonopin is just like all the other benzos, some are stronger, some longer lasting, but they all act on the same GABA receptors. Benzos are total shit and are so hard to get off of. They have a laundry list of side effects and long term effects. They also cause long-term intractable depression that sometimes is permanent even after stopping. Benzos even cause negative immune system changes long term that should be worrisome for ME sufferers.

I’m pretty sure ME doctors give benzos to battle the sleep problems. Not the benefit / risk ratio is worth it.
 
Perrier said:
I recently spoke with a CFS/ME doctor who stated that he didn't think an answer would be found, because he said, there are multiple things wrong in the body for a host of reasons. I somehow cannot agree, having watched this illness. Somewhere in the body, there is some problem. Why cant they find it
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I'd have to agree with you. Jonathan Edwards has spoken about the labelling of it as "complex, multi-system disease" as being kinda of a misnomer (I don't want to speak for him but that was my understanding). Difficult to find, yes. But, it's there, in all it's pieces, patiently waiting to be reverse engineered as all illness will be with time.
 
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