Treatment during the acute phase
Unfortunately, for many years, patients afflicted by autoimmune encephalitis (AE) were not treated. The disease was unknown; in the absence of a medical diagnosis, sufferers were considered delusional. Some were institutionalized and even exorcised! Fortunately, today, there are many treatments for this diverse set of syndromes, even when the underlying cause is not known.
The treatment options are generally the same across the various AE subtypes, though different strategies (dosing, layering of treatments, escalation, etc.) are deployed depending on the judgment of the clinician and available resources. Treating AE is expensive and highly resource intensive. Many patients face insurance denial for vital medications. This will change once research trials are performed and treatments receive FDA approval, but we need your help to get there.
Treatment options include:
Response to these medications can range from days, to weeks, to months. Relapses unfortunately can occur.
The treatment options are generally the same across the various AE subtypes, though different strategies (dosing, layering of treatments, escalation, etc.) are deployed depending on the judgment of the clinician and available resources. Treating AE is expensive and highly resource intensive. Many patients face insurance denial for vital medications. This will change once research trials are performed and treatments receive FDA approval, but we need your help to get there.
Treatment options include:
- Removing a tumor (if present). Patients who have a tumor that is removed, recover faster and are less likely to experience a recurrence (or relapse) of their disease than those in whom no tumor is found.
- Intravenous immune globulin (IVIG), which are antibodies given intravenously made up of proteins that helps your body fight infections
- High-dose steroids to reduce the inflammation in the brain (on a tapering plan)
- Plasmapheresis (PLEX), which replaces the patient's blood containing the autoantibodies with a donor's blood (also called plasma exchange)
- Cytoxan (cyclophosphamide), a cancer chemotherapy medication
- Rituxan (rituximab), an IV monoclonal antibody therapy
- Cellcept (mycophenolate mofetil) and Imuran (azathioprine), oral immunosuppressants
Response to these medications can range from days, to weeks, to months. Relapses unfortunately can occur.
Long-term recovery
After the acute phase of AE has passed, many survivors wonder, “Is this as good as it gets?” They are left to recover from an acquired brain injury: their cognition is impaired; their speech is impacted; their balance is off. And their sense of well-being seems elusive. Of course, rest, determination, and patience are important factors in recovery. However, few resources point patients and their caregivers to the possibilities for, and value of, comprehensive rehabilitation.
There are a number of rehabilitation options that can be of benefit to survivors, including physical therapy, occupational therapy, speech therapy, cognitive therapy and behavioral therapy. It is believed that these therapies are most effective when engaged in the months immediately following the acute phase of the illness. However, many survivors see amazing benefits even years after the inflammation is gone.
There are a number of rehabilitation options that can be of benefit to survivors, including physical therapy, occupational therapy, speech therapy, cognitive therapy and behavioral therapy. It is believed that these therapies are most effective when engaged in the months immediately following the acute phase of the illness. However, many survivors see amazing benefits even years after the inflammation is gone.
Rehabilitation strategies
- Physical Therapy with a physiotherapist helps patients restore and maintain their mobility. For encephalitis patients, this might include re-learning how to walk, improving balance to prevent falls, addressing dizziness, headache/pain and fatigue, and increasing cardiovascular fitness/endurance.
- Occupational Therapy with an occupational therapist helps patients return to their pre-encephalitis activities (usually work or school) when there are physical and cognitive changes. The goal is to maximize independence, learn how to use adaptive equipment, and maximize range of motion.
- Speech Therapy with a speech language pathologist helps patients improve their ability to exchange thoughts, ideas, wants, and needs with others. Programs can be designed to work on skills such as articulation, fluency, producing sounds, understanding the meaning of words, and combining words or ideas to express a message.
- Cognitive Therapy with a speech language pathologist helps patients remediate impairments in thinking skills. Strategies can be developed to support successful communication and address deficits in attention, memory, executive functioning, and verbal reasoning.
- Psychological Therapy with a psychologist, therapist, or counsellor helps patients and caregivers alike process through the emotional impact of encephalitis. While many endure medical trauma, PTSD, and complex emotions in the wake of this life-changing illness, psychological therapy is often overlooked as a means of aiding recovery. Common experiences faced by encephalitis survivors and caregivers include emotional dysregulation, difficulties with coping, feelings of isolation, loss of identity, depression, and anxiety. Psychological therapy is often a helpful strategy for addressing these challenges.