Abilify- Stanford Clinic Patients

Butydoc

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Thank you very much for more detail. When you have a moment, please let me know the following: do you still suffer from intermittent toxic feeling, flu feeling, OI, which are so often present also in this illness. You speak of increased energy, but what about the other symptoms? Have you any thoughts on what exactly this Abilify is helping with in the body? Or is the mechanism not entirely known? Thank you again for your speedy response.
My improvement appears t be global except sleep issues. I’m certainly not in remission but substantially improved. I was able to make a market run and plan to walk today. That hasn’t been possible for the past several months.
I use to wake up feeling awful which would persist until I went to sleep just to repeat it the next day. I’m referring to the flu like feelings. Now I’m general ok until about 5-6pm. My OÍ seems improved. I sit down stairs in my house instead of lying in bed most of the day. Cognitively probably also improved by really haven’t tested
It. Very early trial but first time in 18 years that I have had such a quick response to an intervention without an obvious down side. I doubt this is a placebo effect but only time will tell.
 

perrier

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@Butydoc What you are describing is an astonishing improvement! Not sure if this can happen only from reducing neuroinflammation, it must have hit very close to the root of the issue, probably modulating the immune system.
I really also do wonder why Abilify is helping--what is it touching? Are there psychiatrist researchers working with Dr. Davis? They do use this drug.

Dr. "Butydoc" states that Dr. Bateman's patients are on doses of 0.1-0.5 mg. Is there anyone who can report about her. patients. How long have they been on this med? Have the improvements been sustained?
 

JES

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I really also do wonder why Abilify is helping--what is it touching?
A million different things, lots of good references in this post. It's my speculation, but I have a feeling Abilify through reducing neuroinflammation could help especially patients with lots of "brain" issues like light sensitivity, brain fog, etc., perhaps less those with only PEM-type fatigue. Is this the cure Ron is looking for? Probably not, but since he hasn't found anything curative, I hope they take a more pragmatic approach and study drugs like Abilify, which at least seem to help with symptoms.
 

leokitten

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Most of yall taking brand or generic? Does that matter?
If generic exists most insurance companies will not let your doctor prescribe brand name, except in maybe in specific cases (can’t really think of one). Generic and brand name are identical. Abilify has been generic for quite some time.
 

choochoo

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I'm wondering now if the effects could be placebo. 0.1mg seems unbelievably low. We shall soon see. Keep us posted.
 

Treeman

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@Treeman he never said injected.
He never said he didn't either. He did say,

Abilify also comes in a solution of 1mg per ml. I use a tuberculin syringe which allows me to use 0.1mg increments. I started at 0.1mg and up it to .2mg over two weeks. I plan to stay on this dose since I have had a good clinical response from moderately severe to mild. I was bed rest 90 percent of the time, now I’m am back walking 2 miles/day. Batemen’s patients use anywhere from 0.1-0.5mg/day.
I wrote "0.1mg appears to be injected" not that it is injected. I couldn't see how such a small dose orally would be so beneficial. Also, he said he used, tuberculin syringe which I assumed is used for injecting, I don't know if that's correct or not? I commented hoping it could be cleared up. Thanks.
 

Butydoc

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Have you taken in to account whether they are injected or orally administrated? 0.1mg appears to be injected, 2mg orally.
Aripiprazole also comes as a solution, 1mg/ml. I do use a tuberculin syringe.
It terms of being a placebo, it’s possible. I do have significant arrhythmia, atrial, that require me to take inderal and Valium every 2-3 days. So far I haven’t had any arrhythmia since starting aripiprazole.
I just spoke to another person who was on 0.1mg/ml but had to stop secondary to side effects.
As a side note, Valium is not an antiarrhythmic medication, but it stops my atrial problem. I only take it as needed to prevent tolerance and dependency. I believe my heart problem is centrally mediated since a cardiac work up was normal.
 

leokitten

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After I stopped Abilify at a dose of 0.5mg orally, I got much worse. Much weaker. Extremely sensitiv to any noise and light. Like before.
I now take .25mg and I still see improvement!!
And the sideeffects are not that extreme anymore.

So probably other persons also benefit from a smaler dose....
Is it possible some adjustment period is required for the ME brain to get used to it and then benefits would follow? Since we can be sensitive to drugs and changing dosages.

Since you are still seeing improvements at 0.25 mg no need to change anything, but if improvements stop in future I wonder what you could do. Maybe by then you would’ve been taking it long enough that your brain would be used to it and 0.5 won’t make you worse.
 

Badpack

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@Butydoc a friend of mine has the same problems with Cfs and arrhythmia. The answers are alpha and beta adrenergic antibodies that are very common in Cfs. They completely vanished with Ivig and Rituximab therapy. Didnt do much for Cfs, but his heart is fine with this therapy regime.
 

Butydoc

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@Butydoc a friend of mine has the same problems with Cfs and arrhythmia. The answers are alpha and beta adrenergic antibodies that are very common in Cfs. They completely vanished with Ivig and Rituximab therapy. Didnt do much for Cfs, but his heart is fine with this therapy regime.
Hi Badpack,
I took rituximab without obvious benefit. I have bradycardia with episodes of tachycardia. There appears to be a problem with my autonomic nervous system. Sometimes parasympathic dominance and other time sympathetic hence the use of inderal for tachycardia and Valium for bradycardia. One drug works directly on the heart and the other the CNS.
 

Badpack

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@Butydoc same for me. Took Rituximab over 6 months without any benefits at all. My friend has an event recorder. Without Rituximab, he had 20+ Arrests per month. With Rituximab and no antibodies anymore 0. So it def. helped him. But Cfs stayed exactly the same.

Other possibility could be sympathetic denervation of the heart because of small fiber neuropathy. Also pretty common in Cfs sadly.
 

leokitten

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It’s really interesting how seeing in all these testimonials the most effective Abilify dose for each person with ME varies a lot between 0.25 mg all the way up to 4.5 mg / day. So I am wondering if there is any correlation between disease severity before Abilify and dosage (worse severity higher dosage)? Naturally excluding those who have medication tolerance and sensitivity issues possibly due to severity.

Would those who are trialing Abilify and it’s improving symptoms if you see this maybe chime in with your pre-Abilify severity level and the dosage you are finding most effective currently?
 
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