Abilify- Stanford Clinic Patients

[YippeeKi YOW !!]

@CactusJilly

I also did not feel comfortable putting this medication in my brain.

It would be a last-ditch, Hail Mary for me, as well. But if you're desperate and have tried everything else, it's worth the risk, so long as you're aware that there are some.

did the Abilify "cut through" and interrupt a chronic pain firing cycle? I also wonder if this will last.

I deeply, profoundly hope that it does. Courage deserves a reward.

 

[YippeeKi YOW !!]

( I have been trying to wean myself off of it because of the size effects and it's been hell).

Anti-d's are awful to get off of, and taking it very very slow is the only way. They're as bad as benzos, and most professionals regard benzos as harder than heroin to get off of, with potential damage from a too-fast taper being unlimited and possibly life-long

Plus the side effects sound like fun: compulsively gambling and sex ? Beats being bed bound (jokes!)

Well, let's see. A serious gambling habit could cost you your home, and therefore your bed, and compulsive sex would pretty much keep you in bed forever. Jes' sayin' .....this is the new emoji that looks like it forgot to put on its eye-patch but doesn't mind ....

 

[YippeeKi YOW !!]

@hmnr asg, @CactusJilly

5 YEARS??
I am also opening the capsule and taking beads out but my timeline has been three months.

WAAAAAAY TOO FAST!!! 5 years may seem extreme and you may not need that long, byt 3 or 6 months is going to cause you more pain than I think you need or want. And it's almost inevitable that a fast cut will put you back on Cymbalta bfore you can say "What the fff..... !!!"

Wish me luck getting off this beast!

Believe me, I do. Take it very, very, VERY low and slow in terms of cuts and just know that it WILL get better.

 

[Learner1]

Thanks for the link @Learner1 ! According to the info in the link it may help to selectively block leukotriene biosynthesis - which may help MCAS patients with high leukotrienes. Maybe that's why it can also help in rheumatoid arthritis.

Perhaps after your IVIG you get an MCAS flare..... Have you actually tried Boswellia yet?

Yes, the IVIG does flare my MCAS, but symptons have improved over time. I take 2 Thorne Research Boswellia capsules every 4-6 hours the day of IVIG and for 2 days after. It is very helpful.

 

[wigglethemouse]

Yes, the IVIG does flare my MCAS, but symptons have improved over time. I take 2 Thorne Research Boswellia capsules every 4-6 hours the day of IVIG and for 2 days after. It is very helpful.

Thanks for the feedback @Learner1

 

[nyanko_the_sane]

WAAAAAAY TOO FAST!!! 5 years may seem extreme and you may not need that long, byt 3 or 6 months is going to cause you more pain than I think you need or want. And it's almost inevitable that a fast cut will put you back on Cymbalta bfore you can say "What the fff..... !!!"

Sometimes the cures are worse than the disease, I don't want to try anything that is going to make things worse than they already are in the long run. Scary stuff...

 

[YippeeKi YOW !!]

Sometimes the cures are worse than the disease, I don't want to try anything that is going to make things worse than they already are in the long run. Scary stuff...

@nyanko_the_sane
Absolutely totally agree. In the words of that great American sage, Twain: "It's easier to stay out than to get out."

Now if somebody would just hammer that home to the medico-pharma complex, life would be a lot easier.

 

[used_to_race]

Research shows schizophrenia has severe neuroinflammatory features, so the thinking goes Abilify might help with neuroinflammation in ME. Just one of the theories anyway.

I'm not criticizing you for bringing this up but I feel compelled to mention that this type of thinking is not scientific. Just because there is neuroinflammation in schizophrenia doesn't mean that Abilify or any other "antipsychotic" medication treats neuroinflammation. I will again mention that these medications have an abysmal safety and efficacy record, and are hugely controversial even in the disorders for which they were originally marketed. I would not consider taking an antipsychotic for ME/CFS under any circumstances.

 

[nyanko_the_sane]

I will again mention that these medications have an abysmal safety and efficacy record, and are hugely controversial even in the disorders for which they were originally marketed. I would not consider taking an antipsychotic for ME/CFS under any circumstances.

I completely agree, but some of us are quite willing to try these medications even if they are dangerous. The doctors that prescribe these medications to us are only trying to help us in any way they can. It just sucks that there are so few options for us. For most of us, LDN is about the safest thing we can take.

 

[hmnr asg]

Also i dont see too much downside to "trying" something. If you feel no improvements in a few weeks you can just stop it. I doubt a few weeks of low dose abilify will do permanent damage.

this type of thinking is not scientific.

Scientific thinking hasnt got any of us anywhere. Science hasnt even touched this CFS problem yet.

ps I would try anything for even a small chance at even small improvements. Many people with this illness are at the end of their ropes.

 

[YippeeKi YOW !!]

Many people with this illness are at the end of their ropes.

That's what worries me about things like Abilify and it's evil little cousins. For some of us, one more slide down the ladder could be all it takes. Fiddling with what brain this illness has left us just seems a lot like Russian roulette, only without any way to figure the odds before pulling the trigger .

 

[Learner1]

Scientific thinking hasnt got any of us anywhere. Science hasnt even touched this CFS problem yet.

I'm not sure where you get that idea. There has been a plethora of helpful research in the past few years. I know I've benefited tremendously from reading the studies and working with my doctors to develop treatments plans atound what the science has shown.

Yes, we all want to be cured by a magic pill, but no we are not there yet and I doubt we will ever be. But patiently pulling the complexity of this disease apart, piece by piece, is possible, applying a toolbox of solutions, and it is posdible to gain significant improvements with thoughtful choices and tenacity.

I'm not criticizing you for bringing this up but I feel compelled to mention that this type of thinking is not scientific. Just because there is neuroinflammation in schizophrenia doesn't mean that Abilify or any other "antipsychotic" medication treats neuroinflammation. I will again mention that these medications have an abysmal safety and efficacy record, and are hugely controversial even in the disorders for which they were originally marketed. I would not consider taking an antipsychotic for ME/CFS under any circumstances.

Agreed. If neuroinflammatuon is indeed the issue, why not try attacking it with somerhing more benign?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3309643/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4888275/

https://www.spandidos-publications.com/10.3892/ijmm.2017.3217

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845393/

I have taken both of these for over a year for neuroinflammatuon caused by my IVIG treatment. They are quite effective in reasonable doses.

 

[hmnr asg]

I'm not sure where you get that idea. There has been a plethora of helpful research in the past few years. I know I've benefited tremendously from reading the studies and working with my doctors to develop treatments plans atound what the science has shown.

Please share this research so I can use it to find a treatment and get my life back (my job, my hobbies, my friends, my health, my desire to live ...). We are all here on this forum and a good percentage of us have lost almost everything and I dont see a systematic solution that has any general applicability. I'm sure if there was even a sliver of scientific explanation for CFS we all wouldn't be in this predicament.

I am happy you have gotten better but I really doubt this was based on any scientific research. Many of us are getting worse. Is it because we are mis-applying science to our treatments? did we snooze on the latest research? I have been treated by the Kaufman clinic (Open Medicine Institute in Mountain View) and the CFS clinic at Stanford (Dr Montoya). I am a lot worse now than last year. What happened to the science? did the science somehow favor you over me?

Did you confuse your own improvements based on your own trial and errors with systematic science-based treatment? did you confuse all these studies that are coming out of Ron Davis' lab with a "scientific explanation"? because it is not. They are just hard at work trying to prove the disease "exists". Which is far from trying to formulate an underlying causative pathology, let alone a treatment option (correlation doesn't equal causation). Of course they hype up their research since the whole endeavor is donation based. Half of research is really marketing even in computer science (my own field). Of course what they are doing is a great first step, but far from saying we have a scientific disease/treatment model.

Right now I can find CFS research that would attribute CFS to:
- Gut bacteria
- brain inflammation
- viral infection
- ATP dysfunction
- blood cell anomalies
- cardiac issues
- candida and fungal infections
- mold
- autoimmune issues
- and now musculoskeletal causes since Jeff got cured by having spinal fusion

And I can keep going. This doesn't look like we are anywhere to understanding CFS, its causes or its treatment. It's a confused smorgasbord of small groups around the world just trying to find correlations from small sample sizes and then forming a half-assed hypothesis based on that. Does this look like we have a scientific basis for CFS?

Where did I get the idea that there is no scientific understanding of CFS? No, where did you get the idea that there is one?

 

[nyanko_the_sane]

@hmnr asg some of us have all of the above. I don't think there is a single magic cure for too many of us.

 

[hmnr asg]

@hmnr asg some of us have all of the above. I don't think there is a single magic cure for too many of us.

I don't think a "scientific explanation" means there will be a magic cure.

Let's take the example of cancer , which is disease that is far from being cured. Also , similar to CFS it's a very heterogeneous illness with many subtypes and different symptoms. But cancer does have a disease model and a scientific explanation! We know how this disease is triggered and what keeps it going etc . With CFS ? All the answers are non-answers.

 

[hmnr asg]

@hmnr asg some of us have all of the above. I don't think there is a single magic cure for too many of us.

I think you are mixing symptoms with the cause.
Many people with CFS developed their illness pretty suddenly. I for one, went in two weeks from a very active person who used to work out 3 hours a day and do 400lb deadlifts, yoga, swimming, running etc, to a decrepit sad excuse for a human.

Are you saying in two weeks I developed auto-immune, gut issues, nerve related issues etc? I do have gut symptoms, neuropathy, food sensitivity etc etc. But these were clearly caused by a single factor. So just like some people on this forum confuse correlation with causation, anecdotal evidence for scientific proof, some also confuse symptoms with causes (i.e., effect with cause).

 

[used_to_race]

Also i dont see too much downside to "trying" something. If you feel no improvements in a few weeks you can just stop it. I doubt a few weeks of low dose abilify will do permanent damage.

I am not sure that's true. This is a medication with a poor track record for safety, and it hasn't been studied in patients with ME/CFS at any dose. You're probably right, but with the research underway now, it makes less and less sense all the time to try risky treatments.

ps I would try anything for even a small chance at even small improvements. Many people with this illness are at the end of their ropes.

I hear you, and as a milder case who has found some success by throwing money at the problem on a hunch, I can't possibly claim to understand what you're going through beyond the barest details. But I want to point out that the severity of your condition probably means you are more sensitive to medications in general, so a low dose of Abilify could set you back weeks or months if there's a negative reaction. If you're willing to try and be a data point, that's your own set of values and I respect that, even though I disagree and wouldn't do so myself. I know more than the average user on here about the safety of antipsychotics, so I view it is my duty as a member of the community to raise that awareness.

 

[nyanko_the_sane]

Are you saying in two weeks I developed auto-immune, gut issues, nerve related issues etc? I do have gut symptoms, neuropathy, food sensitivity etc etc. But these were clearly caused by a single factor. So just like some people on this forum confuse correlation with causation, anecdotal evidence for scientific proof, some also confuse symptoms with causes (i.e., effect with cause).

Nope many of us continue to develop symptoms after the initial onset. My list has over twenty debilitating symptoms by now. For instance I have a number of autoimmune conditions that have sprung up since the initial hitting of the brick wall. EBV is thought to continue to unlock new conditions even in its dormant state. There is still so much we don't know, but at least there is some new information.

 

[YippeeKi YOW !!]

used_to_race

But I want to point out that the severity of your condition probably means you are more sensitive to medications in general, so a low dose of Abilify could set you back weeks or months if there's a negative reaction.

Couldn't agree more if you paid me .....

I know more than the average user on here about the safety of antipsychotics, so I view it is my duty as a member of the community to raise that awareness.

I'm right there with you, racer, keep banging that drum, people need to seriously consider the potential for some fairly stellar possible damages when trusting these medications, no matter the implied promises or hopes. Or the desperation that the more severe iterations of this creepy, mean little bustard of an illness creates.

 

[Mama Bear]

I have taken Abilify as an add on to antidepressants. I'm not sure how long I took it, a couple of years at least. 5mg and then I tapered down and thankfully I've been off of it for about two years now. I personally would not ever go back on it. Someone posted the "life altering" side effects and I will say that yes they are true and you don't realize that what you are doing are medication side effects until you are off the medication and you look back.
I don't have ME/CFS, I'm a caregiver so I do understand that feeling of wanting to try anything that might help. If Abilify does help or turns out to be a miracle drug for ME/CFS just know ALL of the side affects are a real possibility. If you do take it I would suggest having someone close to you monitor your behavior closely.