Frequently Asked Questions
How long does treatment last?
Autoimmune Encephalitis is a group of diseases with each type of AE displaying specific symptoms and syndromes. Within that scope, cases can range from mild to severe with ICU admittance. Some adults and children with autoimmune encephalitis will recover quickly within months of being diagnosed and starting treatment while recovery may take years for others.
Many research studies show that patients continue to improve 18 months to 2 years after starting treatment. Patients, caregivers and parents want to know, and need to be informed, about what things to look out for as their loved one is recovering. Because the presentation of this disease is so dramatic and there is such relief felt when the patient has made such a good recovery, we tend not to place an emphasis on lasting problems. Although follow-up is often reported as “good” following autoimmune encephalitis, many patients have significant cognitive problems and fatigue that persist several years after apparent recovery.
In a recent study presenting comprehensive longitudinal data for the cognitive outcome in NMDAR encephalitis, all patients had cognitive deficits about 2 years after disease onset, mainly affecting memory and executive function. After 4 years, moderate or severe cognitive deficits persisted in 2/3 of patients despite good functional neurological outcome, indicating that cognitive function is an important outcome measure in addition to the functional neurological scales. Impaired cognitive outcome was predicted by delayed treatment and higher disease severity. However, continued improvement of cognitive function was observed for several years after disease onset in some patients. Parents and caregivers should not underestimate the burden these lasting cognitive and behavioral challenges are for them.