Abilify tolerance

[Jessie 107]

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?

I'm very pleased to hear that Abilify seems to be working for you again, it's still working for me after almost two years.
Though I am in a crash atm due to over exertion, really important to still pace carefully when feeling improved. I crash much less now too.
I also don't feel as ill as I used to, no flu like or malaise symptoms.

Wishing you well.

 

[leokitten]

I'm very pleased to hear that Abilify seems to be working for you again, it's still working for me after almost two years.
Though I am in a crash atm due to over exertion, really important to still pace carefully when feeling improved. I crash much less now too.
I also don't feel as ill as I used to, no flu like or malaise symptoms.

Wishing you well.

That's really awesome, sorry I totally lost touch with what was going on here after it stopped working the first time and I reverted back to previous severity level. Very happy for you! Are you on if I remember correctly 1 or 2 mg / day?

 

[leokitten]

@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!


Yes, please!

I started moclobemide over three months before first starting low dose Abilify. It of course helps with mood and curbing my ME related sudden carb hunger quite a bit when I've overexerted too much, all other symptoms it does nothing but I continue to take it because of the above because these alone are worth it.

I started pentoxifylline if I remember correctly a month into first run on Abilify, after seeing @serg1942 's thread on it (thank you @serg1942!!!). It doesn't help at all with core ME symptoms, but after taking it for months I believe it significantly started helping with ME caused peripheral circulation issues, arm and lower leg muscle pain, temperature regulation problems, skin texture changes and hair loss symptoms. All of these symptoms have significantly improved but it took three months of taking it before this happened. At first I thought it was due to Abilify, but after stopping that for over six months these improvements continued. Could be due to moclobemide or both together, didn't stop the former to test it so cannot be certain.

Moclobemide 300 mg 2 x per day
Pentoxifylline 400 mg 2-3 x per day

For sleep I alternate/mix up combinations of these meds below and take breaks to not build up tolerance, have used the first four for years before low dose Abilify. Added eszopiclone into the mix shortly after first starting Abilify because of the increased insomnia you get initially, but then I didn't need sleep meds almost at all only occasionally for months after when the increased insomnia turned into wonderful almost pre-ME sleep due to Abilify! Hope this happens again in a few weeks.

Tiagabine 8 mg
Clonidine 0.1 mg
Melatonin 3-5 mg
Hydroxyzine 25-50 mg
Eszopiclone 3 mg

I have no idea if taking all the above has helped me respond very well to low dose Abilify again after a long break, they certainly could have. Hope this helps.

 

[Jessie 107]

@leokitten
I am taking 2mg.
Are you in the UK?

 

[sb4]

@leokitten Am I right in thinking you re-tried abilify before and didn't receive benefits so this is your 3rd cycle(?) of taking it?

If so how long where the gaps between each cycle?

 

[jaybee00]

@leokitten

Congrats that it is working again. Unfortunately, I am a bit of a pessimist and I'll wager that tolerance will set in again.

 

[leokitten]

@leokitten
I am taking 2mg.
Are you in the UK?

U.S.

 

[leokitten]

@leokitten Am I right in thinking you re-tried abilify before and didn't receive benefits so this is your 3rd cycle(?) of taking it?

If so how long where the gaps between each cycle?

I've only done the first cycle before this one now, so this is my second cycle I started a week ago.

I did the first cycle from early February last year until (can't exactly remember now) early November? For me low dose Abilify never fully or suddenly stopped working like it did for other people, those last months it started very slowly and incrementally not helping nearly as dramatically as it did the first 3-4 months which were amazing. It was still helping when I stopped but I thought (guessed) if I took a long break like others have reported then it could work really great again. I took a break for over 6 months.

@Jessie 107 I know you were really severe so this might factor in a lot in your decision making, but have you thought of taking a 6 month break from it to see if you can recover the initial benefits you experienced for a few months?

 

[GlassCannonLife]

That's great news @leokitten! I hope it continues! Please keep us posted.

The theory on discord is that neuroinflammation causes the rapid and semi-permanent development of tolerance. Not sure if you're on there? Perhaps you've been careful enough in this in-between period to allow yourself to regenerate/restore those connections/pathways?

 

[leokitten]

That's great news @leokitten! I hope it continues! Please keep us posted.

The theory on discord is that neuroinflammation causes the rapid and semi-permanent development of tolerance. Not sure if you're on there? Perhaps you've been careful enough in this in-between period to allow yourself to regenerate/restore those connections/pathways?

During the interim I reverted to being pre-Abilify sick again which was housebound with spells of bedbound. So forced to rest a lot more but many times I was forced to do things so would need to take tons of COq10 like 1600 mg as this helps a bit with energy and fatigue for usually about six hours before wearing off. I would do what needed doing and then crash hard later.

So in some ways I’m not sure I was taking care of pacing enough, but I think your hypothesis is plausible. I did have a lot of weeks resting a lot so maybe it was enough.

 

[leokitten]

@leokitten

Congrats that it is working again. Unfortunately, I am a bit of a pessimist and I'll wager that tolerance will set in again.

No worries I know your heart is in the right place and I agree I’m fairly certain it will again and not sure if it will be faster or not. But if I can truly cycle like this, 6 months on and 6 months off, it will be the first major treatment step forward for me in 9 years of illness.

 

[leokitten]

By the way, what's the point in taking the moclobemide? I've never heard of it before.

Moclobemide is the only available reversible MAOI drug. Specifically it’s a RIMA - reversible inhibitor of MAO-A, but it also reversibly inhibits MAO-B to a lesser extent, approx 80% MAO-A inhibition and 30% MAO-B inhibition.

Being a reversible and more selective MAOI, it avoids the stringent blood pressure tyramine diet restrictions of older irreversible non-selective MAOIs. Moclobemide also doesn’t have the litany of side effects SSRIs and SNRIs have.

 

[leokitten]

I’m a couple days prior to two weeks on Abilify and noticed that the last few days when I’m waking up and in the morning I have some run down/hungover ME symptoms, maybe 20-30% the severity of no Abilify. By 10am it’s gone. Could be because I’ve been exerting so much more during this week because I got major symptom improvements after 1 week this time and the drug is still building up. A little worried maybe this could also mean it might start not working as well as before.

 

[leokitten]

Moclobemide is the only available reversible MAOI drug. Specifically it’s a RIMA - reversible inhibitor of MAO-A, but it also reversibly inhibits MAO-B to a lesser extent, approx 80% MAO-A inhibition and 30% MAO-B inhibition.

Being a reversible and more selective MAOI, it avoids the stringent blood pressure tyramine diet restrictions of older irreversible non-selective MAOIs. Moclobemide also doesn’t have the litany of side effects SSRIs and SNRIs have.

At 300 mg twice a day I’ve not paid any attention to what I’m eating tyramine-wise and my blood pressure it still low or below normal (mostly low because of ME).

 

[leokitten]

I’m a couple days prior to two weeks on Abilify and noticed that the last few days when I’m waking up and in the morning I have some run down/hungover ME symptoms, maybe 20-30% the severity of no Abilify. By 10am it’s gone. Could be because I’ve been exerting so much more during this week because I got major symptom improvements after 1 week this time and the drug is still building up. A little worried maybe this could also mean it might start not working as well as before.

I can report now that this appears to be going away as of this morning. I exerted a ton yesterday, I went for a long walk outside in the sun and heat and did a number of things around the house including mentally exerting things the computer… now it feels like the first time on abilify, I wake up and I don’t feel the hungover sick flu nausea pain grogginess at all, it feels pretty much like I distantly remember how I would generally wake up before ME.

So things are now similar as the first time, it just went a different way this time don’t know why I started already having like a 70-80% response a week in instead of nothing until more than two weeks in the first time.

 

[sb4]

@leokitten Do you plan on cycling again at the first signs of tolerance or are you going to just keep taking it and see?

 

[leokitten]

@leokitten Do you plan on cycling again at the first signs of tolerance or are you going to just keep taking it and see?

I will try to do same as before. If I stopped at the very first signs of tolerance I would have to stop like 2-3 months in. Within 2-3 months for sure I started getting early signs, but it continued to provide signif benefit for months longer before my body eventually felt it wasn’t doing enough anymore. This would be ideal then I can go back to ME recluse for six months and hoping so hard it will continue to work again

 

[leokitten]

Update... I think I got COVID again, or the low dose Abilify isn't working as well, it's really hard to tell right now until it either gets better (then likely COVID) or doesn't get better (Abilify not working nearly as well so soon)

I got three doses of Pfizer, last one early Dec 2021. In January I started having a chronic cough, a spot in my throat that felt inflamed, and feeling very low level flu-like body symptoms, aches pains immune system ramped up etc. It lasted a month just like that and I tested postive for COVID about three weeks into it. Only the last couple days did I have a sudden fever spike and then voila it was completely gone.

I don't get as many ME flu-like symptoms for a very long now, only when I've overexerted a ton will I feel the next day in the morning like I'm coming down with the flu. So in January I thought for the longest time it was just ME but the cough was the outlier. This time around haven't gotten a cough instead only the flu-like body symptoms out of nowhere and I have been spending my time in bed and housebound. First week of this I was mostly in bed, now it's gotten better I feel the flu-like symptoms only in the morning and by midday the Abilify is showing that it's working because feel signif better than I do w/o Abilify ME baseline.

I've been exerting a lot more since Abilify worked again, so really hard to tell what the culprit is right now. If it completely goes away and can exert a lot again without feeling bad then likely COVID.

 

[leokitten]

Has anyone experimented combining low-dose Abilify with low-dose Lamictal (lamotrigine)?

If neuroinflammation is what is causing issues, and for sure many of us have typical ME easy overstimulation noise/light sensitivity causing PEM/crashes without any physical exertion, then maybe low-dose Lamictal 25-50 mg combined with Abilify could provide some benefit?

 

[hapl808]

As far as I understand it Abilify helps promote dopamine release. I wondered if promoting dopamine release trough other natural means would have the same beneficial effects.

I know that playing video games releases dopamine. I usually cannot play games due to symptoms and lack of energy and focus. However, one day I forced myself to get into a certain game and surprisingly after a few hours of playing I noticed increased energy and reduction of symptoms. The biggest sign that the game helped was that I didn't get the typical afternoon crash I get almost every single day.

So maybe dopamine does something that fixes us, until we run out of it? Maybe people get tolerance from Abilify because the dopamine release blunts over time from it? Similar to how novel activities (new foods, video games, etc.) start getting less novel over time (due to less dopamine being released).

Then again there's the caveat that maybe those benefits people get from dopamine release is maybe just masking of symptoms and not a temporary cure.

I haven't tried Abilify, but the dopamine connection always seemed relevant for me. If I have an enjoyable social interaction late in the evening, my symptoms improve a bit for a few hours while the 'good feeling' is going. But I wake up the next morning with hacking LPR-type reflux, then headaches and migraines, PEM crash, etc. If I don't talk on the phone late at night or work on the computer, no reflux, 'normal' headaches instead of migraines, no PEM crash, etc.

Seems like supplements or drugs that work on the right neurotransmitter lever would be helpful, but there's always the risk that the 'right' lever in the 'wrong' direction could make things worse. Do we need more dopamine precursors, inhibited reuptake, inhibited production, etc?