Abilify- Stanford Clinic Patients

[GlassCannonLife]

How long until I should notice positive effects from Abilify.?

Day 1 of week 5 was yesterday.. First dose on 1 mg. Had done
7 days 0.25 mg
10 days 0.5
11 days 0.75 (so 4 weeks between the 3 doses)

Had nasty insomnia but have also started having this weird thing where I'm waking up feeling like I'm about to pee myself.? Normally I can just hold my urine fine and sleep through without getting up.. But I would literally every time I fell asleep have this happen and wake me up since around midnight for hours.. Not sure wtf is going on? Don't really want this long term..

Insomnia has been on and off a little over the weeks but this pee thing has started around a week or so ago with just one or two and has been on and off seemingly worsening now with the escalating dose.

Haven't had any positive effects yet. Any thoughts on how long to try it for before giving up.?

Maybe @jaybee00 @hmnr asg @leokitten @Judee anyone else please also comment. How long did it take to feel the positive effects for you? What is a good amount of time to trial?

Thanks!

 

[leokitten]

@GlassCannonLife you might need a higher dose or it could be it doesn’t work for you at all.

You should step up to 2 mg and each dose step on your way there it should take about two weeks after on to it to see. Some people needed up to 2 mg before things kicked in.

 

[leokitten]

For me the first time it two 2 weeks or so on 0.5 mg, this second time only 0.25 for 1 week until it kicked in. Both times it was VERY noticeable that it’s working.

 

[GlassCannonLife]

@GlassCannonLife you might need a higher dose or it could be it doesn’t work for you at all.

You should step up to 2 mg to and each dose step on your way there it should take about two weeks after on to it to see. Some people needed up to 2 mg before things kicked in.

Despite horrid side effects.?

 

[hmnr asg]

Side effects should technically subside after two weeks.
You may just not be a responder.

 

[jaybee00]

For me—pretty quick response—week or two. All of a sudden you’ll get a ton of stuff done in the morning…

 

[Judee]

Not on Ability but iirc some on FB said they started to feel it soon after starting.

 

[leokitten]

Despite horrid side effects.?

Sorry I was just trying to answer your main question, and that’s the only way you will know pretty much for sure if will work or now, side effects aside

 

[GlassCannonLife]

Sorry I was just trying to answer your main question, and that’s the only way you will know pretty much for sure it it will or not work, side effects aside

Thanks all! Sorry leo didn't mean to sound harsh.! And yeah I agree with what you said.

I'll go back to 0.75 for a few days more and see if it'll settle down then maybe try climb again slowly (3-4 week jumps) until I either get a response, give up due to side effects, or hit 2 mg for a month and have no benefit.

 

[GlassCannonLife]

Thanks all! Sorry leo didn't mean to sound harsh.! And yeah I agree with what you said.

I'll go back to 0.75 for a few days more and see if it'll settle down then maybe try climb again slowly (3-4 week jumps) until I either get a response, give up due to side effects, or hit 2 mg for a month and have no benefit.

I stopped taking it a few days ago.. Incontinence issues are a bit too much for me. Already feeling improvements on that front, like 75 % better.. Some depression I think as a withdrawal effect or something? Stopped cold turkey as long half life seems ok.

Unfortunately not a win for me here

 

[leokitten]

I stopped taking it a few days ago.. Incontinence issues are a bit too much for me. Already feeling improvements on that front, like 75 % better.. Some depression I think as a withdrawal effect or something? Stopped cold turkey as long half life seems ok.

Unfortunately not a win for me here

There is no way that stopping it just a few days ago, after being on it as long as you have, would make much signif difference in blood levels. So I what you are feeling is (reverse) placebo effect / in your head.

 

[Judee]

There is no way that stopping it just a few days ago, after being on it as long as you have, would make much signif difference in blood levels.

Unless, could he be a rapid metabolizer? Do you think that would make a difference?

 

[leokitten]

Unless, could he be a rapid metabolizer? Do you think that would make a difference?

@GlassCannonLife do you know if you are a CYP2D6 ultra-high metabolizer? There are a number of other drugs which are primarily metabolized by this pathway.

 

[GlassCannonLife]

There is no way that stopping it just a few days ago, after being on it as long as you have, would make much signif difference in blood levels. So I what you are feeling is (reverse) placebo effect / in your head.

No idea about the metabolism.. Hm it definitely is different ie I'm not waking up every 10 min about to wet myself - hard to placebo during sleep right..? Isn't the active metabolite half life 98 h so would be down by 1/2 after 4 days.? The problems started to escalate only after a number of days on 0.75 mg so would have dipped below that level as quickly I'd assume. Don't know!

 

[leokitten]

Now on my second cycle for over three months. This second cycle has been slightly different in it’s progression. If you remember, this time around it started working faster at a lower dose, it took only 1 week at 0.25 and felt my ME symptoms melt away.

For the first two months things have been great, but as expected I plateaued and already started feeling that it’s slowly lose efficacy again, maybe this time at a rate slightly faster than the first time around.

Go figure,,, no understanding why. I wonder what the third cycle will be like, will the great time feeling normal last shorter and shorter?

Abilify continues to be so intriguing and really if a group of scientists wanted to figure out the core of a big ME subset, this drug is such a opportunity to bring forward much more understanding. With this medication I go from bedridden ME hell zombie with so many symptoms can’t think about anything, to almost NORMAL! How how how what ME dysfunctional system is it temporarily correcting?!?

 

[Castorp]

For those of you diagnosed with POTS in addition to ME/CFS, what is the effect of Abilify on POTS symptoms?

 

[leokitten]

For those of you diagnosed with POTS in addition to ME/CFS, what is the effect of Abilify on POTS symptoms?

I had OI during the first year, but it eventually stablized more or less. POTS/OI could be there but for me but more subclinical than others I believe. But I do have major balance problems. Wrt cardiovascular I think my heart doesn't seem to get signals to increase heart rate for what I need to be doing, more stuck in bradycardia I believe this causes some important symptoms.

Abilify helps me immensely with almost every ME symptom I have. Many symptoms just completely melt away It makes me really sad that ME scientists keep going around in circles and following red herrings that get nowhere, but for a big subset they react like me at least the first cycle the did, it's like your ME almost completely goes away. There has got to be some way they can do before and after bloodwork to give them a clue as to what is driving this terrible illness.

 

[Marylib]

Personally, I am sick of the clinical trial thing, but if something works, well - we have to find a way to get it to the people who need it. @Whit has already been serving as a trial subject in a sense- and he's not the only one. People continually search for ways to heal. And who can blame them? This is a long hard road so I hope we can stick together and help each other.

 

[Rvanson]

Marylib: We know that there is already a medication that would help 70 percent of ME/CFS patients, called Ampligen. Why is this not in use, when AIDS/HIV patients are living normal lives at the taxpayer's cost of up to $12,000 dollars a month? Treatment with Ampligen would be much less than that for HIV/AIDS patients. This has been known for 30 years, so why the long holdup? I am not young either.

 

[Marylib]

Marylib: We know that there is already a medication that would help 70 percent of ME/CFS patients, called Ampligen. Why is this not in use, when AIDS/HIV patients are living normal lives at the taxpayer's cost of up to $12,000 dollars a month? Treatment with Ampligen would be much less than that for HIV/AIDS patients. This has been known for 30 years, so why the long holdup? I am not young either.

Yeah, every time the FDA refuses to approve Ampligen, more and more people are doomed to suffer.