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Abilify- Stanford Clinic Patients

hapl808

Senior Member
Messages
2,134
I know, please don’t clap back, this isn’t the case for everyone, I just want people to know that CNS drugs pretty much always means lots of side effects in the beginning and it can last for weeks, and these are for drugs that really work in those patients that have terrible side effects in the beginning.

Definitely not clapping back. This is just my concern, as I think you're correct that most of the time these side effects are temporary. Whether the drug works or not in the long run, those side effects will dissipate for most people. The traumatic part for many of us is how many times doctors have either told us 'this is how it will work' and we've found it didn't work that way (eg. when I was constantly encouraged to push through fatigue and pain and told there was no risk of long term damage). And when we hear 'most', we have a feeling that we won't be one of the 'most people' from prior experiences.

Again - not a clap back and I'm considering a trial with LDA, but concerned about what I do if I push through the side effects and it doesn't work long term for me - will there be long term damage.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
@hapl808 thanks for the response and I totally understand, it’s not easy. The temporary side effects that occur at the beginning of taking almost any psychotropic drug can last weeks before improving. This is true for Abilify as well you can find this online. After that if they don’t subside or improve then it’s up to each person knowing their body when it’s been a long enough time to stop if things don’t improve. But I just wanted to remark on the fact that many people just stop within the first few days or couple weeks, not saying they shouldn’t, but just want to inform people that it’s actually pretty normal to have bad side effects in the beginning, so stopping that early won’t prove to you whether it will work or not or whether side effects will be like that forever
 
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leokitten

Senior Member
Messages
1,595
Location
U.S.
Did you have nasty side effects with Abilify? I didn't recall you saying you had. Pardon me if you mentioned it previously. I'm just not remembering.
I’ve been very fortunate that I don’t experience most side effects from taking pretty much everything I’ve tried. But I think people like me are rare. So yes I didn’t experience any signif side effects from Abilify. Maybe during ME years 1-2 the illness caused more sensitivity to meds but then I went back to how I was before, I never got that permanent ultra sensitivity that a lot of people got after falling ill.
 

hmnr asg

Senior Member
Messages
565
I also had a lot of side effects with abilify for the first two weeks. As @leokitten said, this has always been the case for me as well with any psych medication. I'm glad I persisted and kept taking the abilify because after two weeks the improvements were dramatic. Unlike anything I had tried before.
But as we have discussed in the previous pages, I lost all the benefits after two months and went back to my pre-abilify baseline. But I am glad I tried it. While it was working I had two great months with zero side effects, and the when I had to eventually stop it because it had pooped out it didnt cause my any problems either (i.e., no withdrawals).
 
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leokitten

Senior Member
Messages
1,595
Location
U.S.
How about any significant benefits/improvements? And for what duration, at what dose? I'm still on the fence ....
Most of my ME/CFS symptoms basically disappeared for the first 1-2 months. Then for me they slowly creeped back in over a period of 3-4 months after that until it was better to stop and take a break. I stopped for around 6 months and started again and it worked like this the second time. I haven’t been able to start it up again, had a death in my immediate family last year that contributed to my current severity so not taking any meds now.
 

junkcrap50

Senior Member
Messages
1,337
How about any significant benefits/improvements? And for what duration, at what dose? I'm still on the fence ....
I'm also on the fence and have been for a long time. I've been sort of keeping it in the back pocket as a desperate hail mary if I get so bad that I can't live anymore.

But one thing that has sort of made me reconsider is that one @nolongerdiseased , on Phoenix Rising & on Reddit, cured his CFS by being on Abilify and then getting sick with a cold. Sort of like the Abilify let the immune system become resettable when the right sort of reset trigger came along. See their 2 posts: https://forums.phoenixrising.me/thr...nfa-itaconate-shunt-part-2.89388/post-2431209 and https://forums.phoenixrising.me/thr...r-7-years-of-me-cfs-what-worked-for-me.88787/ .
 

YippeeKi YOW !!

Senior Member
Messages
16,056
Location
Second star to the right ...
I'm also on the fence and have been for a long time. I've been sort of keeping it in the back pocket as a desperate hail mary if I get so bad that I can't live anymore.
I'm pretty much right there with you. I'm terrified at the thought of trying one more thing, risking one more disappointment, wearing out one more hope ..... and especially something as dicey as an anti-psychotic. So I've been keeping it like a rabbit's foot, or a talisman of some sort ...
But one thing that has sort of made me reconsider is that one @nolongerdiseased , on Phoenix Rising & on Reddit, cured his CFS by being on Abilify and then getting sick with a cold.
Oh nooooooooo .... that brings it into the arena again, in a serious way ....

Are you gonna .... oh never mind, none of my business....

Thank you for those links, and for being on the same wavelength :):):) !!!!
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
Not to diminish all the hard work that @nolongerdiseased did, they did a ton to make it happen, but we all know very well that likely the biggest contributing factor to their remission is their young age that allowed for all the other protocols to make enough difference. It just makes a huge difference what age you get this disease, and if it’s past your late 20s or so and you’ve had it more than 2 years chances of recovery dwindle no matter what you throw at it.
 

hapl808

Senior Member
Messages
2,134
Not to diminish all the hard work that @nolongerdiseased did, they did a ton to make it happen, but we all know very well that likely the biggest contributing factor to their remission is their young age that allowed for all the other protocols to make enough difference. It just makes a huge difference what age you get this disease, and if it’s past your late 20s or so and you’ve had it more than 2 years chances of recovery dwindle no matter what you throw at it.

One of the things that frustrates me about allowing myself to push and crash in my 40's.

I had onset at 25. Went pretty quickly to moderate, but I learned to cope. Bad crash in my early 30's while traveling, but only took me weeks to recover from being bedbound. More crashes, more recoveries. Just bounced around moderate for years - always limited, but always coping somehow.

Crash in my early 40's, and took over a year to just get walking again. Then pushed it too much and a series of problems (allergic reactions, injury, pushing through) led to more crashes. Now closing in on 10 years bedbound or housebound. Haven't been able to walk in many years, which seems different than most ME/CFS, but neurologists never seemed to think I had MS, etc.

Would love to hear reports of people in their 40's who had onset more than 10 years prior who recovered from an extended crash into severe (even just back to mild-moderate).

Less of those.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
One of the things that frustrates me about allowing myself to push and crash in my 40's.

I had onset at 25. Went pretty quickly to moderate, but I learned to cope. Bad crash in my early 30's while traveling, but only took me weeks to recover from being bedbound. More crashes, more recoveries. Just bounced around moderate for years - always limited, but always coping somehow.

Crash in my early 40's, and took over a year to just get walking again. Then pushed it too much and a series of problems (allergic reactions, injury, pushing through) led to more crashes. Now closing in on 10 years bedbound or housebound. Haven't been able to walk in many years, which seems different than most ME/CFS, but neurologists never seemed to think I had MS, etc.

Would love to hear reports of people in their 40's who had onset more than 10 years prior who recovered from an extended crash into severe (even just back to mild-moderate).

Less of those.

It’s just exceedingly rare, like chances in the single digits. And a lot of times when I read of older people recovery stories they either didn’t have ME for that long, or it was more mild severity, and then I always question whether they had the same textbook ME like I feel a lot of us have.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
I also think that when you contract this illness at a younger age, you have more of an opportunity to basically stop you life to do what is needed to recover. If I had gotten sick in my 20s or earlier I could’ve basically closed up shop on my life, moved in with my parents, and focused 100% on recovery. You simply can’t do that when you are older, you have a ton more responsibilities and you can’t just quit everything for however long it takes, which is what is needed for ME recovery, society for adults just isn’t built to support this.

So it’s all too common that we spend the first crucial years pushing and crashing and doing everything wrong we had no choice. I got sick at 37 I don’t know for sure but if I could’ve just quit life and focus on recovery the first 2-3 years it might’ve made a difference.
 

Viala

Senior Member
Messages
640
I also think that when you contract this illness at a younger age, you have more of an opportunity to basically stop you life to do what is needed to recover. If I had gotten sick in my 20s or earlier I could’ve basically closed up shop on my life, moved in with my parents, and focused 100% on recovery. You simply can’t do that when you are older, you have a ton more responsibilities and you can’t just quit everything for however long it takes, which is what is needed for ME recovery, society for adults just isn’t built to support this.

So it’s all too common that we spend the first crucial years pushing and crashing and doing everything wrong we had no choice. I got sick at 37 I don’t know for sure but if I could’ve just quit life and focus on recovery the first 2-3 years it might’ve made a difference.
You may be on to something here, recovery stories are focused on what helped, but not everyone writes about their environment during their recovery and this may be the difference between going into remission or not. Working part time, needing to do shopping or cooking is not the same as having a caring partner or parents, so that one can focus solely on the recovery, having a psychological and financial comfort so there is no need to push oneself just to get by.

It is even possible that it's not about our age at all, but the fact that when we're older many of us just can't drop everything for a year or two to recover.
 

Mimicry

Senior Member
Messages
179
You may be on to something here, recovery stories are focused on what helped, but not everyone writes about their environment during their recovery and this may be the difference between going into remission or not. Working part time, needing to do shopping or cooking is not the same as having a caring partner or parents, so that one can focus solely on the recovery, having a psychological and financial comfort so there is no need to push oneself just to get by.

It is even possible that it's not about our age at all, but the fact that when we're older many of us just can't drop everything for a year or two to recover.
I wish someone had warned me about ME when I contracted it in 2008, I was 19 back then and now I'm thinking I might have been able to recover if i'd just rested enough for a year or two. Healthcare professionals told me I'm just depressed and in bad shape (mind you, I worked two physical jobs, went running several times a week, worked out at gym, rode my bike everywhere... And suddenly I wasn't able to recover from exercise anymore 🤔).
 

YippeeKi YOW !!

Senior Member
Messages
16,056
Location
Second star to the right ...
It just makes a huge difference what age you get this disease, and if it’s past your late 20s or so and you’ve had it more than 2 years chances of recovery dwindle no matter what you throw at it.
.... at least as far as we know at this point, and possibly subject to change as more is discovered. Cause with this vicious little sinkhole of an illness, one never knows, can one?
 

Martin aka paused||M.E.

Senior Member
Messages
2,291
Hi there,

I haven't been around because I am extremely busy with my research funding NGO.
Good to be back.

But of course, I am here to solve a personal problem: I have a crash.
Last time Abilify worked for me again after a year (!) of drug holiday (after I had developed tolerance, as some might remember). Unfortunately, one five weeks or so. Then again: A crash and it stopped working.

Before I read the whole thread here since I was gone: Has anyone figured out how and why it works and what to do when tolerance kicks in?

My problem is that, at the moment, many things might be very helpful (financially) for research funding, and I can't afford to miss out on these opportunities because of this f....ing crash.

Thank you,

Martin
 

Martin aka paused||M.E.

Senior Member
Messages
2,291
Btw one idea is the following:

The study, "Dopamine regulates pancreatic glucagon and insulin secretion via adrenergic and dopaminergic receptors," offers some insights into the mode of action of olanzapine, particularly as it relates to dopamine receptors (D2R) and the dopamine transporter (DAT).

First, it is important to understand that olanzapine is an atypical antipsychotic commonly used to treat schizophrenia and bipolar disorder. It acts as an antagonist at several receptors in the brain, including dopamine, serotonin, and epinephrine receptors.

The statement that olanzapine increases the mRNA of D2R and increases the binding of DAT refers to the drug's mode of action at the cellular level. mRNA (messenger RNA) is a type of RNA that serves as a template for protein biosynthesis. In this case, the statement refers to the production of D2R, a specific type of dopamine receptor. Increasing the mRNA of D2R would lead to increased production of these receptors.

DAT (dopamine transporter) is a protein that transports dopamine, a neurotransmitter, from the synaptic cleft (the space between neurons) back into neurons. This process is called reuptake. Increased binding of DAT would mean that more dopamine is removed from the synaptic cleft and transported back into neurons.

The statement that olanzapine could help prevent or reverse tolerance development refers to the drug's ability to increase the number of D2Rs and increase the reuptake of dopamine. This could lead to neurons being more sensitive to dopamine, which could help prevent or reverse tolerance to dopamine or dopaminergic drugs.

In terms of a graphical representation, you could think of it like this:

1. olanzapine binds to various receptors in the neuron, including D2R.
2. this leads to increased production of D2R by increasing the mRNA of D2R.
3.At the same time, olanzapine increases the binding of DAT, leading to increased reuptake of dopamine.

These two processes could help prevent or reverse tolerance development by increasing the sensitivity of neurons to dopamine.



The second:

Dihydrexidine (DHX) and propyldihydrexidine (PropylDHX) are drugs that act as full D2 receptor agonists. An agonist is a substance that binds to a receptor and elicits a response similar to the natural response. In this case, DHX and PropylDHX bind to D2 receptors, which are a type of dopamine receptor, and elicit a response similar to the natural response that dopamine elicits.

These drugs also act antagonistically at the presynaptic inhibition of dopamine release. An antagonist is a substance that binds to a receptor and prevents a response from being triggered. In this case, DHX and PropylDHX prevent dopamine from being released by binding to the presynaptic receptors and inhibiting their activity.

This dual action could help prevent or reverse tolerance development. Tolerance development means that the body becomes accustomed to the presence of a drug and requires more of it to achieve the same effect. By acting as both agonists and antagonists, DHX and PropylDHX could help prevent or reverse this process.


I have no idea :)
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
Hi there,

I haven't been around because I am extremely busy with my research funding NGO.
Good to be back.

But of course, I am here to solve a personal problem: I have a crash.
Last time Abilify worked for me again after a year (!) of drug holiday (after I had developed tolerance, as some might remember). Unfortunately, one five weeks or so. Then again: A crash and it stopped working.

Before I read the whole thread here since I was gone: Has anyone figured out how and why it works and what to do when tolerance kicks in?

My problem is that, at the moment, many things might be very helpful (financially) for research funding, and I can't afford to miss out on these opportunities because of this f....ing crash.

Thank you,

Martin

Hi Martin, hope you are ok. If I may ask how long was it working for you again this second time before the crash?