Patient handout

Posterior Reversible Encephalopathy Syndrome (PRES)

PRODUCTION

1. Your condition

This handout is for posterior reversible encephalopathy syndrome (pres). Your care team identified this based on: headache + altered mental status + visual disturbance + seizures + severe htn (hinchey nejm 1996 pmid 8559202; fugate lancet neurol 2015 pmid 26184985).

Other reasons your team may use this plan: new seizure in transplant recipient on calcineurin inhibitor or cancer patient on bevacizumab/sorafenib/sunitinib/oxaliplatin/cisplatin (fugate lancet neurol 2015 pmid 26184985); peripartum / postpartum eclampsia phenotype with seizure or altered mental status (triplett pract neurol 2022 pmid 35046115); cortical visual disturbance — hemianopia, cortical blindness, visual hallucinations (parieto-occipital localization) (hinchey nejm 1996 pmid 8559202).

2. Your medications

Take these medications exactly as prescribed. Do not stop or change a dose without talking to your provider.

Medication	Starting dose	How	When	What it does
sirolimus	Per transplant protocol (target trough 4-12 ng/mL)	PO	daily	Switch from cyclosporine / tacrolimus to mTOR inhibitor (sirolimus or everolimus) is the preferred trigger-removal strategy in CNI-PRES; lower PRES recurrence risk (Fischer/Schmutzhard J Neurol 2017 PMID 28054130)
everolimus	Per transplant protocol (target trough 3-8 ng/mL)	PO	BID	mTOR inhibitor alternative when CNI cannot be re-introduced (Fischer/Schmutzhard J Neurol 2017 PMID 28054130)

Plan: PRES trigger-removal + BP-control + seizure-management ladder (Fugate Lancet Neurol 2015 PMID 26184985 + Triplett Pract Neurol 2022 PMID 35046115 + Hinchey NEJM 1996 PMID 8559202)

3. Your action plan

Use these zones to know what to do based on how you feel.

GREEN — Doing well — stable on antihypertensive + AED

If you have:

no_headache
no_visual_changes
no_new_seizure
home_BP_in_range
AED_doses_not_missed

Do this:

Continue antihypertensive + AED as prescribed
Keep neurology + primary-care + MRI follow-up appointments
Avoid the original trigger drug if drug-PRES (do NOT re-start without neurology approval)
Continue home BP log if HTN-PRES

YELLOW — Caution — call neurology / primary care same day

If you have:

new_persistent_headache_>24h
mild_visual_blurring
home_SBP_>160_or_<100
missed_AED_dose
planned_surgery_or_pregnancy

Do this:

Call neurology / primary care same day
Do NOT stop AED without instruction
Bring medication list to clinic call
If pregnancy planned/confirmed, call BEFORE any medication change

RED — Emergency — call 911 / go to ED

If you have:

new_seizure
sudden_visual_loss_or_double_vision
severe_headache_with_AMS
loss_of_consciousness
new_focal_weakness_or_speech_difficulty
severe_HTN_at_home_SBP_>200
pregnant_with_severe_headache_or_visual_changes

Do this:

Call 911 / go to nearest ED
Bring medication list
Tell ED you have a history of PRES and what your original trigger was

Call your provider if:

Any red-zone trigger
After any ED visit so neurology team is updated

4. When to seek emergency care

Call 911 or go to the nearest emergency room right away if you have:

Status epilepticus in PRES — clinical or electrographic (Fugate Lancet Neurol 2015 PMID 26184985)(life-threatening)
DWI restriction within PRES territory — cytotoxic-edema variant (Bartynski AJNR 2008 PMID 18403560)
Cerebral hemorrhage on initial or follow-up imaging (10-15% of PRES) (Fugate Lancet Neurol 2015 PMID 26184985)(life-threatening)
SBP >180 despite two IV antihypertensives in PRES — refractory hypertensive crisis (Fugate Lancet Neurol 2015 PMID 26184985)
Peripartum / postpartum PRES with eclampsia phenotype (HTN + proteinuria + seizure) (Triplett Pract Neurol 2022 PMID 35046115)(life-threatening)
Atypical-PRES with brainstem / deep gray / cerebellar involvement (Bartynski AJNR 2008 PMID 18403560)
PRES with concurrent thrombotic microangiopathy (schistocytes + thrombocytopenia + LDH; ADAMTS13 confirms TTP) (Fugate Lancet Neurol 2015 PMID 26184985)

5. Follow-up

Neurology clinic 4-6 wk; repeat MRI 1-3 mo for resolution; long-term recurrence prevention (BP control if HTN-PRES, avoid CNI re-challenge or use mTOR alternative, avoid future bevacizumab if oncology-PRES, pre-pregnancy counselling if eclampsia-PRES); AED duration 3-12 mo per seizure recurrence + EEG; mood / cognition screen — post-PRES cognitive deficits described in cytotoxic variant (Triplett Pract Neurol 2022 PMID 35046115; Fischer/Schmutzhard J Neurol 2017 PMID 28054130)

6. Sources

Guideline: Fugate/Rabinstein Lancet Neurol 2015 PRES review (PMID 26184985) + Hinchey NEJM 1996 original description (PMID 8559202) + Bartynski AJNR 2008 imaging/pathophys (PMID 18403560) + Triplett Pract Neurol 2022 modern review (PMID 35046115) + Fischer/Schmutzhard J Neurol 2017 mechanisms review (PMID 28054130)