Abilify tolerance

[GlassCannonLife]

I started taking 0.25 mg/day which didn’t have any effect until a couple weeks in I raised it to 0.50 mg and then very soon after that most of my ME symptoms disappeared. For me I was in the group of people where I didn’t suddenly reach tolerance, instead it slowly reduced in its effect on ME symptoms over a period of months until 6 months or so in it wasn't working nearly as well as in the beginning and I eventually stopped. I didn’t have any withdrawal symptoms and only over the next couple months my ME symptoms came back to to pre-Abilify.

Will try the same approach this time. I also started moclobemide three months before trying low dose Abilify so I don’t know if it played a role in my experience, but it had zero effect on my ME symptoms during those three months I was taking it by itself and didn’t prevent reverting back after. I still take it every day.

Ah ok cool thanks. But you don't believe if you had stayed eg at a housebound level of exertion the benefits would have lasted longer before waning?

 

[GlassCannonLife]

I started taking 0.25 mg/day which didn’t have any effect until a couple weeks in I raised it to 0.50 mg and then very soon after that most of my ME symptoms disappeared. For me I was in the group of people where I didn’t suddenly reach tolerance, instead it slowly reduced in its effect on ME symptoms over a period of months until 6 months or so in it wasn't working nearly as well as in the beginning and I eventually stopped. I didn’t have any withdrawal symptoms and only over the next couple months my ME symptoms came back to to pre-Abilify.

Will try the same approach this time. I also started moclobemide three months before trying low dose Abilify so I don’t know if it played a role in my experience, but it had zero effect on my ME symptoms during those three months I was taking it by itself and didn’t prevent reverting back after. I still take it every day.

By the way, what's the point in taking the moclobemide? I've never heard of it before. Is it meant to help ME or help with Abilify tolerance or something? If you notice no effects then why are you still taking it?

 

[leokitten]

By the way, what's the point in taking the moclobemide? I've never heard of it before. Is it meant to help ME or help with Abilify tolerance or something? If you notice no effects then why are you still taking it?

I started taking it for long-term ME related hopelessness and depression. It has no effects on my ME symptoms whatsoever but on this it helps.

After having ME for 9 years now last year I started (understandably) getting hopeless and depressed for the first time. The first 4-5 years in I was very hopeful and fighting very hard going to doctors and tests and trialing everything under the sun. I thought research was going to turn a corner soon. After that period I started giving up on any treatment or doctor helping because nothing really did, but I was still hopeful for research and scientific progress even as my severity continued to get worse.

Then 8 years in and it having destroyed most of my previous life and seeing research going nowhere, treatments going nowhere, severity still declining, I started losing hope and that this is going to be the rest of my life. I got ME at 37 yo and 46 now, and I personally think the way things are going I will be old by the time they get anywhere where it won’t really matter to me anymore I would’ve missed the best part of my life. Moclobemide is an antidepressant and it really does help tamp down the hopelessness of this future many of us are looking at.

 

[leokitten]

Ah ok cool thanks. But you don't believe if you had stayed eg at a housebound level of exertion the benefits would have lasted longer before waning?

It lasted longer, or waned slower, for me than for others so not sure. It’s really hard to stay at a housebound level of exertion for long when most of your ME symptoms melt away, it really is. Your brain and body, when they come back online, just simply can’t they want to live. Especially when you have been in the ME hell for so long you just need a respite from that prison.

It’s almost like telling a perfectly healthy person to stay locked up at home and not do much mental exertion either for many months to a year or more… no one could do that seriously no one could. Our human bodies and brains want to think want to be creative want to exert its like second nature. That’s why in the beginning of this disease for many of us even though we were crashing like crazy and getting worse we just didn’t listen it didn’t compute.

 

[GlassCannonLife]

It lasted longer, or waned slower, for me than for others so not sure. It’s really hard to stay at a housebound level of exertion for long when most of your ME symptoms melt away, it really is. Your brain and body, when they come back online, just simply can’t they want to live. Especially when you have been in the ME hell for so long you just need a respite from that prison.

It’s almost like telling a perfectly healthy person to stay locked up at home and not do much mental exertion either for many months to a year or more… no one could do that seriously no one could. Our human bodies and brains want to think want to be creative want to exert its like second nature. That’s why in the beginning of this disease for many of us even though we were crashing like crazy and getting worse we just didn’t listen it just didn’t compute.

Thanks, yeah that makes sense. I can fully see myself having the same issue if I'd try to pace that hard.

 

[Martin aka paused||M.E.]

I still don't think tolerance has anything to do with overexertion.
I crashed many times; why wouldn't it then stop earlier?

Honestly, I see many who took it, didn't live then when it got better, and after a few months, it stopped working, and they felt like they did before.

I'm happy that I enjoyed the four months and saw the sun, my friends and the outside world again.

 

[lenora]

I strongly feel that we should take what we can when we can get it. Crashing occurs, but it also ends. Like Martin said, enjoy the sunshine (even if you need help to simply sit under a tree or in the sun for a short while), feel like you're part of life, smile.....enjoy it while it lasts.

Then rest....watch mindless TV, read an easy book if something detailed is too much for you, listen to books on tape, meditation or comforting music. . I realize that some people are too sick for any of this, but most of us seem to have respites for a short time. No, I wouldn't recommend cleaning the house, going shopping for groceries, or overdoing things in any form. 7

Tidy up as you go along, expect your family to do the same. I've had this for a long, long time and have experienced new surgeries, different treatments, vitamins and holistic therapy, meds.....whatever you do you do. Always remember this: We're guinea pigs, and so are our doctors for the most part.

Sure the fentanyl crisis has been a stain upon our country and many others. It has provided a setback of probably 25-30 yrs., but it can and will be overcome. Read about Purdue, learn the reasons why what occurred did, and realize that very few doctors were actively involved in writing illegal prescriptions. They were kept in the dark as much as most of society. Where was the CDC, different drug approval boards? I think you'll find answers to most of these questions. Watch DOPESICK (I found it on Hulu good story that followed the lines of what happened. I've been hurt by the changes the Feds suddenly made....but please don't give up. We can't afford it; neither can you.

I'm now 75 yrs. old. You're.in your 40's, if research finds things (and there will be more than one cause....after all, so many of us are different), and I'm sending money for research for you, not for myself. But you know, if it's in time for me to truly be believed, then that will make me happy. What will make me even happier, is that others far younger than I am will be helped. That has been my goal since the beginning and yes, I was hopeful and young, but life has so many twists and turns. Yours, Lenora

 

[leokitten]

Restarted Abilify 0.25 mg today. It’s been over six months since I stopped. Will stay on 0.25 for two weeks and then see if should go up to 0.50 mg, same plan as first time.

I hope it’s a miracle improvement again

 

[Jessie 107]

Restarted Abilify 0.25 mg today. It’s been over six months since I stopped. Will stay on 0.25 for two weeks and then see if should go up to 0.50 mg, same plan as first time.

I hope it’s a miracle improvement again

Fingers crossed it works for you again 🤞

 

[GlassCannonLife]

Restarted Abilify 0.25 mg today. It’s been over six months since I stopped. Will stay on 0.25 for two weeks and then see if should go up to 0.50 mg, same plan as first time.

I hope it’s a miracle improvement again

Too early to ask for a progress update? 😅

 

[leokitten]

Too early to ask for a progress update? 😅

Only been 5 days and no improvement, which is expected as it took me like a couple weeks or more of dosing the first time until the sudden dramatic improvements. Abilify, even at very low doses, has a very long half-life and builds up in your system to reach therapeutic levels and a steady state. I think for its half life steady state takes approx 14 days

 

[nsdn]

Moclobemide - has very few if any side effects compared to SSRIs and SNRIs.

Tell me the dosage please, and also if you noticed flu-like symptoms when you started. Regards.

 

[leokitten]

Tell me the dosage please, and also if you noticed flu-like symptoms when you started. Regards.

I started with 150 mg bid for a couple weeks then went up to the standard dosage 300 mg bid. I’ve had zero side effects from the medication, which is why it’s such a good antidepressant compared to SSRIs/SNRIs which have quite a few as well as issues after long-term use.

 

[leokitten]

This morning for the first time I’ve felt the first Abilify related effect - woke up early and brain/body were able to wake up much more rapidly. Almost every day I feel like total sh-t in the mornings and it takes me until midday for it to become more manageable even after multiple coffees. But this morning got that abilify need to wake up

 

[nsdn]

I started with 150 mg bid for a couple weeks then went up to the standard dosage 300 mg bid. I’ve had zero side effects from the medication, which is why it’s such a good antidepressant compared to SSRIs/SNRIs which have quite a few as well as issues after long-term use.

Thank you. Coincidentally, I got sick with COVID at the same time I started treatment. I tested positive today.

 

[leokitten]

Thank you. Coincidentally, I got sick with COVID at the same time I started treatment. I tested positive today.

Yep likely reason you are getting flu symptoms!

 

[leokitten]

Update - I'm only 1 week in, taking 0.25 mg / day for the first 4 days then a little more 0.35-0.4 mg / day and already it's working. I'm sorry... I feel extremely guilty even reporting this, because Abilify hasn't worked again for many ppl here.

But strangely this time around it's started to work much faster than the first time, before it took more than two weeks before it kicked in. Now already since yesterday morning I'm getting the same major reduction in all ME symptoms, except my late night/early morning gut symptoms which I reported before low dose Abilify doesn't seem to help with, but every other symptoms is starting to dramatically improve. Today right when I wake up my brain and body do not hurt or feel terrible like before, I do not have the super hungover flu hit by a truck feeling I have every single day. I immediately want to clean up the kitchen, want to take a shower, etc, and before every day I feel so bad it take so much mental will and energy to even get out of bed. Now it's like I feel much more like the pre-ME me.

 

[leokitten]

I'm also feeling like ok I need to be very VERY cautiously optimistic... because it's not worked again for so many people as you can imagine I'm in a state right now where I'm very critically reflecting on what is happening to my body asking myself, "is this really happening?". But seriously every single day before this I feel like total utter crap this improvement is very real and dramatic. I hope it lasts the same amount of time.

Also, I'm thinking a lot why is it working again for me? Is it something inherent to my case, my ME, my body? Or is it the meds I've been taking all along nefore low dose Abilify that during the break helped to cause it to work again? Do you all want to know what else I've been taking?

 

[hmnr asg]

@leokitten so happy to hear its working again! that is great news. I hope it keeps getting better and this time the improvements stick around.
Actually, im going to try again too! fifth time is the charm have nothing to lose anyways, worth a shot!

Do you all want to know what else I've been taking?

Yes, please!

 

[JES]

I guess this has been mentioned before, but with Abilify's half-life of 75 hours, it's worth to point out that you will be in a transition phase for about ten days if we use 90% of steady-state concentration as target. Obviously more than that if you also increase the dosage day-to-day.

For myself, the drugs that help tend to deliver the best effect in the transition phase and not thereafter, but I understood you had success with Abilify a little longer than that the first time, so who knows. Even knowing that a drug can work again after it stopped working once is useful. It's like we cannot win by the laws of the universe, but at least we can temporarily break the rules of the Matrix.