Abilify- Stanford Clinic Patients

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doesn't schizophrenia have something to do w histamine malfunction (high histamine, or problems breaking it down or both, etc.)?
I think you are right! Normally the drug is taken in a much higher dose for all those other effects.
The anti-inflammatory effect of Abilify has been studied.
In low doses Abilify is used to treat chronic pain as well. I suspect this is one of the reasons it was prescribed to me.
Stanford seems to prefer prescribing the non-generic name brand version. It seems this Japanese drug has a number of other off-label uses.

Abilify information in detail.
 

Navid

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What kind of success is there with this drug? Which symptoms does it lessen?
Anecdotal stories on the Stanford ME/CFS FB page (Montoya Patients): less brain fog, able to do small tasks when were completely bed-bound before, small increases in energy. No-one has been on for a very long time, so stories are based on a short time span on drug. But hey any good news is welcome. Do a search on FB for Stanford ME/CFS page and join group to see posts.
 

roller

wiggle jiggle
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Anecdotal stories on the Stanford ME/CFS FB page (Montoya Patients): less brain fog, able to do small tasks when were completely bed-bound before, small increases in energy. No-one has been on for a very long time, so stories are based on a short time span on drug. But hey any good news is welcome. Do a search on FB for Stanford ME/CFS page and join group to see posts.
this sounds like the adult ADD/ADHD forums, when they took the usual suspects (vivanse, ritalin and other stronger stuff).

it seemed, that many would develop strange/unwanted side effects quite quickly, and sooner or later end up with more drugs: anti-depressant, then anti-anxiety, in between IBS-problems...
 
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this sounds like the adult ADD/ADHD forums, when they took the usual suspects (vivanse, ritalin and other stronger stuff).

it seemed, that many would develop strange/unwanted side effects quite quickly, and sooner or later end up with more drugs: anti-depressant, then anti-anxiety, in between IBS-problems...
Let's hope the side effects are kept to a minimum because the doses of these medications are quite low in most cases.
 
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I would assume that Stanford would run appropriate tests on the patient's P450, and that they wouldn't be spinning the chamber without good base research

HA! NOPE. I even told them I was on Cymbalta and asked if they were okay together and was told to ask my prescribing physician. I looked it up and there is a "Moderate" interaction. I tried it for 5 weeks and then quit due to side effects. I also did not feel comfortable putting this medication in my brain.
 
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My Experience with low-dose Abilify:

So, after being on Abilify (2 mg) for 5 weeks, I decided to go OFF. I've been off, now, for 2 weeks.

What is interesting: My baseline number for my chronic neck pain has overall decreased.

It's weird. I'm not used to waking up to a low pain threshold. I am usually at a 3-4 and now I am at a 2-3. And we've been having cold and crappy rainy weather, here, which usually makes my baseline higher.

I still have times of bad neck pain (in the 6-8 range) which is the norm for me. It seems to last for less time, though, which is interesting. Oftentimes, I will be in spasm for days. Post-Abilify, it's about 12 hours or less.

I am also sleeping 8-9 hours a night instead of 9-12.

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

Interesting stuff.
 
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I found that Abilify started messing with my vision, plus I was hiccuping all the time. So I decided to stop Abilify. Interestingly my pain level is a bit less than before and I am waking up earlier in the morning, thus sleeping fewer hours. Kind of matches up with what @CactusJilly is saying. Weird stuff...
 
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doesn't schizophrenia have something to do w histamine malfunction (high histamine, or problems breaking it down or both, etc.)?
Interestingly I ran into a guy with an inflammatory condition triggered by histamines. He decided to try a diet of exclusively histamine free meat, this seems to have cured him of most of his symptoms. Apparently histamines are found in a lot of foods. I can't imagine a diet of steak everyday.
 

hmnr asg

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The Stanford people also prescribed abilify for me but because I was taking cymbalta I thought maybe I should wait until after I quit cymbalta ( I have been trying to wean myself off of it because of the size effects and it's been hell).

I will definitely give it a try once the cymbalta is out of my system ( I know there are no major interactions but I just didn't want to be taking two psych medications at the same time ).

And to the people who are being nay sayers, I say anything beats CFS, I will take my chances . I think anyone understands there are risks and nobody is taking an antipsychotic medication lightly. Plus the side effects sound like fun: compulsively gambling and sex ? Beats being bed bound :thumbsup: (jokes!)
 
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The Stanford people also prescribed abilify for me but because I was taking cymbalta I thought maybe I should wait until after I quit cymbalta ( I have been trying to wean myself off of it because of the size effects and it's been hell).
I'm on Cymbalta, max dose 120mg, too. When I looked it up, it said there was "moderate" interaction between Cymbalta and Abilify. Yes, it is SOOOO difficult to wean off Cymbalta. If I'm even a couple hours late with my dose, I can start to feel brain zaps. Maybe 6 months ago, I read an article about a man, a physician I think, who wrote all about Cymbalta and getting off of it. He was literally opening up the capsule and taking out 1 bead at a time. If I remember correctly, he gave himself a 5 year timeline to titer down (!) I really feel for you doing this.
 

wigglethemouse

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My doctor suggested Boswellia to combat the CNS swelling from my IVIG treatments. It is effective. Apparently it's used by glioblastoma parornts to reduce swelling. Other benefits are discussed here:

https://selfhacked.com/blog/boswellia/
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?
 

hmnr asg

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I'm on Cymbalta, max dose 120mg, too. When I looked it up, it said there was "moderate" interaction between Cymbalta and Abilify. Yes, it is SOOOO difficult to wean off Cymbalta. If I'm even a couple hours late with my dose, I can start to feel brain zaps. Maybe 6 months ago, I read an article about a man, a physician I think, who wrote all about Cymbalta and getting off of it. He was literally opening up the capsule and taking out 1 bead at a time. If I remember correctly, he gave himself a 5 year timeline to titer down (!) I really feel for you doing this.
5 YEARS?? :bang-head:
I am also opening the capsule and taking beads out but my timeline has been three months. I went down from 40 to 20 and that seemed fine but going from 20 to 15 has been nightmarish to say the least. My mood is so so low and i feel like im living in the depths of despair. I think i will extend my timeline to 6 months rather than 3.

I took cymbalta for my trigeminal neuralgia type 2 pain and it was fairly effective for that and also for depression and ocd and anxiety. The only problem was that it made me even more tired which is something i cant afford with CFS.

Wish me luck getting off this beast!