Abilify- Stanford Clinic Patients

leokitten

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I know not very recent article and probably referred to hundreds of times already during this pandemic… but it’s still so relevant to us… I feel this is exactly what happened to us and we have predominantly a myalgic, post-exertional intolerance ENCEPHALOPATHY due to post-viral sequelae

BBC Future: How Covid-19 can damage the brain

We got dain bramage :ill: :confused::grumpy::pem::xpem:
 

Boba

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I know not very recent article and probably referred to hundreds of times already during this pandemic… but it’s still so relevant to us… I feel this is exactly what happened to us and we have predominantly a myalgic, post-exertional intolerance ENCEPHALOPATHY due to post-viral sequelae

BBC Future: How Covid-19 can damage the brain

We got dain bramage :ill: :confused::grumpy::pem::xpem:
My most prominent symptom during Covid was my headache, but the headache maxed only 6 weeks after the initial infection after I exerted myself. At one moment I thought my brain would explode. But can a virus cause this 6 weeks after the infection or is it a mislead immune reaction. Of course the therapist I was seeing back then told me that I was healthy and this was just some trauma from my childhood and health anxiety. Biking 10km every day would help. That’s when the real party started. I really hope they can help us in the near future. Every day being bedridden sucks…
 

leokitten

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At one moment I thought my brain would explode.
During my post-EBV infection or major reactivation sequelae that triggered ME I remember for MONTHS my brain also felt like it was going to explode, like I had terrible meningitis, my cervical lymph nodes were huge and hurt really badly like a constant neck ache due to a tumor pushing on my neck tissue from the inside. We all had similar things happen it’s uncanny
 

Marylib

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I know not very recent article and probably referred to hundreds of times already during this pandemic… but it’s still so relevant to us… I feel this is exactly what happened to us and we have predominantly a myalgic, post-exertional intolerance ENCEPHALOPATHY due to post-viral sequelae

BBC Future: How Covid-19 can damage the brain

We got dain bramage :ill: :confused::grumpy::pem::xpem:
LOL - I've known that for a long time. It's a brain injury. Maybe the endothelial vessel damage brings it on and the immune system goes wonky to perpetuate it - but yeah..it's all connected: multi-system-nightmare-disease, and no one can figure out why we're still alive. Very strange. I seem to have a pulse so I am still technically alive.
 

leokitten

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This is much the same experience I have but on much smaller dosing compared to most. In fact, I enjoy the best effect from Abilify just coming off steady state than I do dosing up to, or sustaining steady state. There's some weird saturation effect here that I don't understand. I'm now working with pulsing the dose, lower dose one day, higher the next. I may even dose every other day (with a higher dose) to compare. I'd love to be continually coming off the drug to enjoy the best of it, but obviously that's not possible!

When I exceed a certain daily dose threshold I start to get much worse. I then skip a day, feel much better than while I'm dosing, then resume the following day at a fractionally lower dose and sustain that steady state. If it's kicked in again for you @leokitten maybe you could resume at a slightly lower dose, or skip one in three days.

In my first trial I found the same effect, as I came off it it kicked in again, and using a steady state calculation chart I determined my daily dose threshold was around 0.2mg. I must be a very poor metaboliser of Abilify. Thinking that metabolising enzyme CYP2D6 might be inhibited by CBD oil and Doxepin, I discontinued them both, and started a new trial. Nothing changed at all, I still cannot tolerate a daily dose of 0.25mg or higher, it actually makes me worse than without Abilify, whereas it helps at 0.19 - 0.20mg. I'm now having 0.19mg one day, 0.25mg the next, and that seems to work better than daily 0.22mg. Go figure!
I haven’t gone long enough to confirm this, but what you’ve experienced does initially feel like what I’m experiencing now. At 0.75 mg per day for many months now it’s felt like there’s been some slowly increasing saturation effect that’s bringing on tolerance or some Abilify molecular side effect that’s been building up negatively counteracting it’s positive effects on ME. When I take a break for a couple days my symptoms improve, so given that it’s hard to tell without taking a full drug holiday if this is going to be better or make things worse.

I’m going to reduce the daily dose to 0.25 mg and see what happens.
 
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Does anyone know if 15mg is too high of a dose to get the 'CFS effect'? It so happens that I've been on that dose for as long as I've had the condition, but for other reasons.
 

jaybee00

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15 mg is a high dose but I think some folks report a positive response at doses above 5mg. Nobody knows really—is it working for you at 15mg?
 
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Boba

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I think Abilify stopped for me as well. I was on 0,65 starting from 0,25 and slowly increasing. The effects were not as big as they seem to be for others. It stabilized me so that I could leave the house for the mailbox daily. Now I‘m back to lying on my back for the whole day. I can still cook small meals or shower, but not as smooth as with Abilify. My main Problems are fatigue especially muscle weakness, wired feeling with low hrv and some headaches. In Novemeber it will be 1 year for me. It still baffles me how fast my decline was. I crashed very hard several time at the first 3 months until I couldn’t walk anymore. Think I f‘ed my system pretty bad with those crashes. Guess that‘s why Abilify didn‘t help so much in General. However there seems to be a possibility to influence this illness with meds,, which keeps me hopeful for the future, even if I‘m very sad right now about the loss of my life.
 
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15 mg is a high dose but I think some folks report a positive response at doses above 5mg. Nobody knows really—is it working for you at 15mg?
I don't know! I'm at about a 3. Maybe I would be worse without it...
That said, my condition got markedly worse about a year ago, after I'd been on the abilify for about a year and a half; so maybe that was the effect pooping out.
 

leokitten

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So far since Sept 4 when I had the last report and blip I’ve really bounced back to how I was on Abilify before. Lowered Abilify dosage to 0.25 mg / day and still doing relatively great with only infrequent downturns that last a day or two and driven by worsening sleep disturbances but have these again infrequently. So no idea but efficacy seems to have gone up again or maybe the idea of having taken it for months and the changes it has caused have become semi-permanent even at a lower dose?
 

jaybee00

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Oh sorry—like nothing at all? There is a post on the FB group from a woman who reached tolerance to Abilify then switched to Rexulti and now is having a good response.
 

Boba

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So far since Sept 4 when I had the last report and blip I’ve really bounced back to how I was on Abilify before. Lowered Abilify dosage to 0.25 mg / day and still doing relatively great with only infrequent downturns that last a day or two and driven by worsening sleep disturbances but have these again infrequently. So no idea but efficacy seems to have gone up again or maybe the idea of having taken it for months and the changes it has caused have become semi-permanent even at a lower dose?
I kind of experienced something similar. I thought., that it stopped working but after a couple of days I began to improve again. But the feelingI have now is different. It feels more like a natural improvement, before that I was a bit more wired. I feel like improving in general. I'm still housebound, but can do more stuff at home without payback. Even had a 3h Poker Session with some friends without PEM. Maybe my Long Covid is slowly resolving or Abilify is working again, I dunno.
 
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I kind of experienced something similar. I thought., that it stopped working but after a couple of days I began to improve again. But the feelingI have now is different. It feels more like a natural improvement, before that I was a bit more wired. I feel like improving in general. I'm still housebound, but can do more stuff at home without payback. Even had a 3h Poker Session with some friends without PEM. Maybe my Long Covid is slowly resolving or Abilify is working again, I dunno.
That really makes me question what's wrong with my body. I think I will give Rexulti a try
 
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Hi everyone,

Hoping to hop into this conversation with you all. It’s going to take me some time to review this thread, but at a glance, it seems low dose Abilify has helped a lot of you, but only shorter term (2-7 months range?).

I’m curious about it, as I’m just now hearing about it for CFS. I’ve tried SSRIs and other classes years ago with no improvements whatsoever (only side effects), but I do believe my dopamine is low as my neurotransmitter and OAT testing both came back with low dopamine.

looking forward to reading through this and hearing your experiences.

Edit:

Its real energy but for some it stops working. That has to do with the physiology of every single one. Not the dose or PEM or anything else. I read a ton of stories bc I wanted it to work again and all those factors really don't seem to matter. Pharmacokinetics and pharmacology itself are very complex and tolerance is not fully understood (occurs often in psych drugs - just at see antidepressants)
I was going to ask you guys about this. With stimulants, the energy I receive causes much worse PEM & crashes. This is not the case with Abilify? If it successfully provides you with energy, it won’t hurt you later in the day (or week, etc)? That sounds amazing. I’m so happy that some of you found some relief and some true energy.
 
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Could Abilify help even if you’re on another atypical antipsychotic drug? (I take low dose olanzapin/zyprexa for anxiety/sleep) Or are the receptors already ”used”?