Abilify- Stanford Clinic Patients

[leokitten]

What about cycling the dosing / treatment? 1 week/month on, 1 week/month off. Or any other duration combinations.

Doesn’t really work or very difficult with long half-life drugs. Takes the average person’s metabolism approx 1 month or more to clear Abilify from their body after the last dose. So even though you are “one month off” you have this long tail of drug in your system during that time.

It basically devolves into stopping the drug for 4-6 weeks and starting over again, which is what some people here are doing. To me it makes sense to take it at a target dose every day and enjoy the benefits until 3-4 months when tolerance builds and then washout out for 1-2 months before starting the cycle again, assuming it works again for 3-4 months like it did the first time and there aren’t any heinous withdrawal effects worsening ME during the washout.

 

[leokitten]

It's still working for me I'm now taking 2 mg everyday

This to me this is the big question I’ve been asking. Does Abilify build tolerance or tachyphylaxis after a few months only in those people who are significantly increasing their exertion during that time?

I think I remember @Jessie 107 saying he’s severe and even on treatment taking it easy, and it seems to continue to work or work much longer in those who are more severe because they aren’t going crazy with exertion while on treatment, ie only increasing exertion marginally and slowly?

 

[JES]

Could be that, or another hypothesis I'm considering is that some of us have active infections, others not. There has been some speculation that the severe patients may be suffering from a different disease cause than the mild/moderate. In the severe patient group that Ron Davis has ran various tests on, he hasn't found any signs of active infection (yet).

How it relates to Abilify, a hypothesis could be that it works (long-term) for those with some kind of autoimmunity/inflammation without infections, but not likely for a subset of patients with active infections.

Whenever I start a new drug or supplement, it has happened quite a few times that I feel better at first, as if something nudged the body in the correct direction. A week or two later, I usually ends up worse than baseline. It feels as if the body has to put the brakes on to prevent further damage, which I always thought would point towards active infections for myself.

 

[leokitten]

There has been some speculation that the severe patients may be suffering from a different disease cause than the mild/moderate.

I personally have my doubts that it’s different. I used to be mild ME years ago and as I’ve gotten worse I went to mild-moderate, then housebound moderate, now mostly bedbound moderate.

Also, during crashes my symptoms become very similar to what a severe person experiences all the time. I cannot take light, sounds, movement without making the crash and pain worse, I need to be in bed in the dark with silence, my brain shuts down and goes completely blank like it cannot think anymore, my body hurts with severe soreness and aches, my insomnia becomes so much worse, and all these other symptoms that become really exacerbated.

The thing is I just come out of it eventually and back to baseline, but I could easily see how that could turn to my baseline eventually. Most people with severe ME don’t quickly become severe after the trigger, it takes time (years) and they go down the severity stages.

 

[Martin aka paused||M.E.]

did you restart abilify?

Yes but no effect

 

[Martin aka paused||M.E.]

This to me this is the big question I’ve been asking. Does Abilify build tolerance or tachyphylaxis after a few months only in those people who are significantly increasing their exertion during that time?

I think I remember @Jessie 107 saying he’s severe and even on treatment taking it easy, and it seems to continue to work or work much longer in those who are more severe because they aren’t going crazy with exertion while on treatment, ie only increasing exertion marginally and slowly?

I’m not a biochemist but I’m sure that your hypothesis is hard to explain in a biochemical way. What should that have to do with tolerance?

 

[leokitten]

I’m not a biochemist but I’m sure that your hypothesis is hard to explain in a biochemical way. What should that have to do with tolerance?

It’s an educated guess based on the little I see. Not sure off the top of my head how overexertion might cause it to stop providing benefit. But people who reported having benefited long-term from any of the ME treatments that seem to have worked in a subset have paced and minimized overexertion during treatment.

 

[Martin aka paused||M.E.]

It’s an educated guess based on the little I see. Not sure off the top of my head how overexertion might cause it to stop providing benefit. But people who reported having benefited long-term from any of the ME treatments that seem to have worked in a subset have paced and minimized overexertion during treatment.

I don’t think that this has anything to do with it ... some bodies built up tolerance, some don’t... from what I read that’s nothing special to ME (take antidepressants as an example).

 

[leokitten]

@choochoo how are you doing? Haven’t heard from you in a while. Are you still taking Abilify?

 

[Jessie 107]

This to me this is the big question I’ve been asking. Does Abilify build tolerance or tachyphylaxis after a few months only in those people who are significantly increasing their exertion during that time?

I think I remember @Jessie 107 saying he’s severe and even on treatment taking it easy, and it seems to continue to work or work much longer in those who are more severe because they aren’t going crazy with exertion while on treatment, ie only increasing exertion marginally and slowly?

I would agree I'm very careful now not to overexert otherwise I still crash badly if I stay under my limits I'm doing ok I feel better on Abilify

 

[Badpack]

Seems like abilify doesn't help the underlying problem in cfs but just conceals it. I still believe its just the brain perfusion that gets improved. Would explain why you cant do more but can do the same just with less symptoms.

 

[Martin aka paused||M.E.]

Seems like abilify doesn't help the underlying problem in cfs but just conceals it. I still believe its just the brain perfusion that gets improved. Would explain why you cant do more but can do the same just with less symptoms.

That’s so wrong. I was in Whitney’s condition. With Abilify I was able to drive, walk, eat...

 

[Badpack]

And you clearly overdid what your body could provide. Seems symptomatic not causal to me.

 

[Martin aka paused||M.E.]

And you clearly overdid what your body could provide. Seems symptomatic not causal to me.[/QUOTE

And you clearly overdid what your body could provide. Seems symptomatic not causal to me.

That’s almost funny if I think back how bad I was and that I wasn’t even able to turn around in bed.
But you can believe what you want.
The important thing is that we have to find a way to deal with tolerance many of us experience

 

[jaybee00]

I wrote Ron Davis an email mentioning that Abilify works, but that tolerance is typically reached after 3-4 months and then it stops working—and that they need to find a work around for this. Hopefully he saw the email. You guys could write him as well..........

 

[Badpack]

I can report the exact same for me and Ativan. I feel a lot better on it. But its just symptomatic. If i try to do more, the crashes still come. And if i would keep pushing like you, i would be far worse of. And following what you and jessie have said. Its looks 1:1 to me. I keeps helping you if you dont overdo. So just a symptomatic relief and that gets worse if dont stay in your boundaries.

 

[Badpack]

@jaybee00 All you do with emailing ron is exhausting him and wasting his time. He knows that abilify stops working for some. Dont bomb him with useless junk emails.

 

[bread.]

There are dozens of short term miracles in medical history that wear off quickly because of tolerance or the system around that goes back to prior equilibrium.

Just look at Zolpidem in TBI or L-Dopa in Encephalitis Lethargica. (which very likely is close to what is going on in Abilify and me/cfs if you ask me).

 

[Martin aka paused||M.E.]

@jaybee00 All you do with emailing ron is exhausting him and wasting his time. He knows that abilify stops working for some. Dont bomb him with useless junk emails.

Why are you so aggressive?
I can only speak for me. But I can do more on Ativan without crashing afterwards?!

 

[Badpack]

Because Ron knows about abilify stop working for some and that they also know how abilify works in Cfs and prob. even know better ways to reach the same goal. And he suggest to email bomb scientists with useless questions because he is impatient.

"They have studied the affect Abilify has on ME/CFS patients at a molecular level and figured out some ways to possibly accomplish some similar things in a much more effective way."