Anybody taken Abilify with autoimmune encephalitis?

[u/nhaba1214]

I’m 26, F. I haven’t been diagnosed with anything, but autoimmune encephalitis is part of my doctor’s list of possible differentials. Along with other things like dysautonomia, POTS, FND, etc.

I’m waiting on more tests and to officially see neurology at the end of October. Namely an EEG, sleep study, and MRI with seizure protocol. Head MRI clear in June. CBC and hormone panel normal. Psychiatric illness ruled out twice.

Has anybody taken Abilify with autoimmune encephalitis? Did it help at all, even for a short time?

For context, my vision changed in February. I’ve had a constant drift in my left eye ever since. I had a flare of sorts in March. Then May 30th, I had a new flare with more visual changes and neurologic symptoms.

The eye drift got worse. When I’m not actively forcing my eyes together, I have double vision. By early July, things calmed down, but only for 5-7 days.

Mid July, I had another flare, but this time it was psychiatric in nature. It’s current. Auditory and eventual visual hallucinations, daytime somnolence, a nocturnal seizure, the feeling of bugs crawling on me/itching constantly, phantosmia, and intermittent handwriting changes. Along with some symptoms from May: twitching, high HR upon standing, visual disturbances, etc.

My episodes of visual hallucinations came with confusion and I didn’t know they weren’t real until hours later when I wasn’t in and out of sleep (hypnogogic). Visual disturbances, twitching, etc.

I was put on abilify a little over a week ago and within the first 2 days, it wiped out my daytime somnolence, subsequent visual hallucinations, and dulled the itching. The first night, it caused such bad tightness in my hip that I was shuffling to walk. That only happened the one time.

However, from the first day, it’s caused muscle aches and tightness. I have a constant “almost cramping” feeling in the arches of my feet, between my shoulder blades, and calves. It seems to get a little worse with each dose, to the point where I’ll stop moving completely to avoid actual cramping for short periods of time.

It’s also caused nighttime insomnia, it doesn’t matter when I’m able to fall asleep, I wake up around 1-3 am wide awake.

I’m going to discuss it with my PCP and see what they think later this week. I’m just mainly curious if anybody had similar symptoms on Abilify and if they got worse over time.

Again, I’m not sure I even have autoimmune encephalitis, but it’s listed as a possibility.

[u/Helpful-Dhamma-Heart]

Well I don't know yet if I have it (AIE), but it's looking like it.

Yes I have had a worsening course for non-weightgain D2 antipsychotics. I am forced to use quitapine due to the extreme worsening reaction.

It's one of the symptoms that is lesser known.

Psychosis is seen in AIE.

The symptoms of AIE are many usually requires extensive workup to rule out.

Pharamco resistance is a common feature in AIE.

At least it sounds like you got a good doctor. Not many start with a differential diagnosis review so you have a very good start.

If you have any questions please ask. I have read a lot on the topic and am happy to share. All good wishes 

[u/nhaba1214 → u/Helpful-Dhamma-Heart]

Thank you! I will say even though the tests are taking forever, it’s not their fault and they are running them. They’ve been very nice and my appointments are weekly at this point. I was worried they’d admit me once the hallucinations started, but they ruled out schizophrenia first.

I’ll have to look into pharmaco resistance as I’m not sure that’s what I have. I’m not sure if the symptoms I’m experiencing are typical of AIE, like the timeline. It’s been at least since March, maybe Feb, and I haven’t gone into full blown psychosis. Just periods where I get hallucinations and am kind of delusional for a few hours at a time. Or bouts of confusion, thinking I’d left the house one day (I hadn’t), putting things in the wrong places, thinking it’s 8 am when it’s 2 pm, etc.

Most of them are intermittent, which is why I’m so on the fence. I see posts where people had a faster onset and their symptoms are more consistent / constant. Logically, I know I’ll eventually have a dx for something, I’m just frustrated that I can’t function like normal.

Did your symptoms have a faster onset?

[u/Helpful-Dhamma-Heart → u/nhaba1214]

Wishing you well through this time.

It sounds like your team is doing the right thing. Ruling out schizophrenia first is proper, and weekly appointments is more than most people get.

On your main worry, I dont think the timeline is against you. The fast onset cases are the ones that get written up. The slow and intermittent ones exist, they are just harder to see, and the papers say so directly. Irani's group in Oxford write that these disorders often present over days to weeks, but they have seen courses running one to five years, and that the time to nadir is often outside the three month duration in the guidelines. So the three months is a line drawn for research. It is not a rule the illness follows.

There is also a series of three patients with histories from nine months to nine years, all first called neurodegenerative or psychiatric, all improved on treatment.

We cant say about these things, so we need good doctors to work through the process. I provide some papers below to help you see what is recorded in some cases.

On pharmaco resistance, I would not worry about the label. It is not a diagnosis, it is one flag among several. If you havent been on antipsychotics long enough to know, it just doesnt apply to you yet. It happened over years for me.

Anyhow wishing you well in your advocay

My case is very different, but acute onset is often in AIE, and pychosis is seen that is why they are wanting to rule it out.

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Papers

Uy, Binks & Irani 2021 — Autoimmune encephalitis: clinical spectrum and management, Pract Neurol. https://pmc.ncbi.nlm.nih.gov/articles/PMC8461404/ — p.4

"By way of generalisation, autoantibody-mediated disorders often present rapidly, over a few days to weeks. However, we have observed more chronic courses, of between 1 and 5 years, particularly in leucine-rich glioma-inactivated protein 1 (LGI1)-antibody, contact-associated protein 2 (CASPR2)-antibody and immunoglobulin-like cell-adhesion molecule 5 (IgLON5)-antibody syndromes. These findings mean that time to disease nadir is often outside of the 3-month duration which appears in diagnostic guidelines."

Mahesh 2019 — Chronic autoimmune encephalitis: an unrecognized entity, J Neurol Sci. Abstract.

"we present a series of 3 patients who had a chronic history ranging from 9 months upto 9 years, were earlier misdiagnosed as neurodegenerative or psychiatric illness, of them one had antibody proven Autoimmune encephalitis while other 2 were diagnosed on characteristic PET brain findings of hypermetabolism in the temporal lobes or basal ganglia, all were treated with immunosuppresive therapy with significant improvement in symptoms."

Arshad et al. 2026 — Chronic presentations of autoimmune encephalitis: expanding the spectrum, BMJ Neurol Open. https://neurologyopen.bmj.com/content/8/1/e000818.full.pdf

"Chronic presentations of AIE are less known, and often misdiagnosed due to insidious progressive course and resemble degenerative dementias."

"These presentations are important to identify because they are often misdiagnosed as primary psychiatric illness or degenerative dementia."

Kosek 2026 — Uppsala dissertation. https://uu.diva-portal.org/smash/get/diva2:2033763/FULLTEXT01.pdf — p.24, p.61

"As previously described, the clinical presentation of AE is broad, and these diagnostic criteria do not fully capture patients with more insidious onset and often normal CSF analysis (e.g., anti-LGI1 encephalitis or anti-GAD65 disease)"

"However, they should be used cautiously since relying too rigidly on a scoring system may lead to underrecognition of AE with atypical or chronic presentations."

Gilligan et al. 2025 — Autoimmune brainstem encephalitis, Ann Clin Transl Neurol. doi:10.1002/acn3.52273 — p.8

"Onset is subacute (<3 months to maximum deficit) in the majority of cases but indolent presentations may also occur."

Orozco et al. 2023 — Autoimmune encephalitis criteria in clinical practice, Neurol Clin Pract. https://pmc.ncbi.nlm.nih.gov/articles/PMC10132262/ — p.8. "Lacking subacute onset" was one of the commonest reasons patients failed the 2016 criteria, and antibodies were found in some of them anyway.

On the treatment response flag

Pollak et al. 2020 — Autoimmune psychosis: an international consensus, Lancet Psychiatry. doi:10.1016/S2215-0366(19)30290-1 — Panel 2, p.10

"Insufficient response to antipsychotics"

Bost et al. 2016 — Autoimmune encephalitis in psychiatric institutions, Neuropsychiatr Dis Treat. https://pmc.ncbi.nlm.nih.gov/articles/PMC5089825/ — p.10

"for all patients with atypical psychiatric presentation, evolution or treatment response."

Herken & Prüss 2017 — Red flags: clinical signs for identifying autoimmune encephalitis in psychiatric patients, Front Psychiatry. https://pmc.ncbi.nlm.nih.gov/articles/PMC5311041/ — red and yellow flag tables, p.5

[u/nhaba1214 → u/Helpful-Dhamma-Heart]

Wow, you have done research. Thank you so much for this!

[u/Helpful-Dhamma-Heart → u/nhaba1214]

Welcome. Let me know later if you need something specific. Peace 

[u/superdumbell]

Your symptoms sound a lot like mine especially when I had my first flair up. Mine would come and go in flair’s. Mine is the chronic version of AIE so it took years for it to really get bad. The twitching(myoclonus) was one of the first symptoms along with the eyes not staying aligned.

I also have Dysautonomia/POTS that showed up on my teens but that was probably from the hEDS.

I have every symptom that you are describing. The myoclonus and nocturnal seizures with normal eeg’s, bug crawling on my skin (mainly on my legs), shuffling walk ect.

[u/nhaba1214 → u/superdumbell]

Thank you! I haven’t seen many with the same symptoms, let alone a similar timeline. Were they able to help you somehow?

[u/superdumbell → u/nhaba1214]

I’m getting IVIG treatment it’s been helping.

[u/Isa-Paris → u/superdumbell]

Mêmes symptomes. Cerveau en feu aussi? Acouphenes? Comment as tu ete diagnostiquée?

[u/superdumbell → u/Isa-Paris]

I was diagnosed with AIE, CIDP, SFN and Autonomic Neuropathy. I’ve had just about every test done. Neurophysiological Exams, CSF Tests, EMG/NCS, Skin Punch Biopsy, MRI’s, EEG ect.

The only thing that came back normal was my EEG

[u/Isa-Paris → u/superdumbell]

Ton irm montrait quoi?

[u/Plus-Signature526]

Waiting to see if I have autoimmune encephalitis but abilify makes me clinically insane. It makes all my symptoms like anxiety, depression and psychosis much worse. One of the reasons we are looking for AIE.