TREATMENTS
The most important thing to know about
treatments is that for an autoimmune
encephalitis like Hashimoto's Encephalopathy is that your main treatment
will be one or more of something called an immune suppressant.
Because our bodies are all different and the
AE is not always the same, there is not one
type of treatment for all of us. This includes any other medications as we don't all take or respond the same way to them.
It is also important to note that for many (not all) who have an AE, antipsychotics can actually make them feel worse and can potentially cause harm to the brain. If you have been prescribed antipsychotics, speak to your doctor about any concerns.
Immune Suppressive Treatments
First line of treatment for HE, typically (and other AE's)
Note: Patients may not receive treatments in this order and may also be prescribed combination of treatments.
Corticoseroids: Usually the first line of treatment is corticosteroids. That is because 90% of patients with HE respond to it and it is both inexpensive and readily available. For severely affected patients who have been hospitalized, treatment is often initiated with a high dose course of intravenous corticosteroids such as 1 g/day for 3-7 days.
Symptoms in some patients may begin to alleviate within as little as 1-2 days after initiating treatment, although improvement is more commonly seen on or after day 3 or 4. After, patients often return home with an oral taper of prednisone for 6-12 months.
IVIG: (Intravenous Immunoglobulin) Applied intravenously through a vein or port. A solution of concentrated healthy antibodies from many blood donors. It boosts the body's immune response.
Plasmapheresis: (PLEX) An apheresis machine cleans the body's plasma containing the bad antibodies from the blood and replaces it with albumin or donor plasma. Administered by vein or ports.
Second Line of Treatment for HE (and other AE's)
Rituximab: (Rituxan) A biologic monoclonal antibody treatment that attacks B cells. It is administered intravenously through a vein or by port.
Cyclophosphamide: (Cytoxan) A type of chemotherapy that attacks the DNA in cells. Can be taken orally or by injection.
Cellcept: (Mycophenolate Mofetil) An immune suppressant taken orally.
Tocilizumab: (Atlizumab) A biologic immune suppressant designed to inhibit parts of the immune system that cause inflammation by inhibiting the chemical signal interleukin-6 (IL-6). Administered by infusion into a vein, port or subcutaneous injection.
Methotrexate: Low dose chemotherapy drug in pill form.
Imuran: (Azathioprine) An immune suppressant taken orally.
Plaquenil: (Hydroxychloroquine) It belongs to a class of medications known as disease-modifying antirheumatic drugs (DMARDS). It can reduce swelling/pain in arthritis and other autoimmune disorders.
Tips To Deal With Side Effects From Steroids, IVIG and Plasmapheresis
Note: Patients may not receive treatments in this order and may also be prescribed combination of treatments.
STEROIDS
Make sure you are tapered off slowly to avoid adrenal insufficiency, which can be a very serious condition.
Use medications like Zofran for nausea or Omepreazole for stomach acid issues. Non medication remedies like peppermint candy can help with the bad taste in your mouth. Ginger chews can help for slight nausea.
Anti-anxiety medications are sometimes prescribed for those who respond to steroids with anxiety.
Melatonin can help with insomnia.
IVIG
Do not take ibuprofin (Motrin/Advil) before hand as this can cause bleeding.
Do take Tylenol or Exedrin before and after infusions as you can develop headache.
Infusions can take several hours. Bring something to eat, drink or a book or movie on your smart device.
Many people take Benedryl before infusions. This may happen only for the first few times receiving IVIG. Benedryl can make you sleepy, preparations for a ride to and from infusions may need to be arranged.
Drink plenty of fluids before and after infusions.
If you start to get a headache during infusions, ask them if they can slow down the rate of infusion.
If you have a reaction or feel sick during or after infusion, tell your doctor or nurse right away. According to IV Living Magazine, the chart below can explain. Their magazine is full of helpful material.
If reactions occur, discuss with your doctor about changing brands of IVIG.
PLASMAPHERESIS (PLEX)
Do not take Ibuprofin (Motrin/Advil) beforehand as this can cause bleeding.
Drink plenty of fluids beforehand.
Your mobility will be limited during procedure: Empty your bladder right before you start, listen to music or watch tv during treatment.
If you are experiencing nausea, ask for a tums or calcium drip.
If you are cold, ask for a heating blanket or blankets.
Notify your plasmapheresis technician immediately if you should experience any of the following signs or symptoms:
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Tingling of lips
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Dizziness
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Lightheadedness
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Sweating
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Coldness
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Nausea
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Cramps
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Bleeding from a vein, port or catheter site
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Itching
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Difficulty Breathing
If you have a catheter or port, notify your doctor, nurse if you experience redness, heat or swelling at the site or if you have fever or chills.
Antipsychotics and side effects
Because of the completely different disease mechanism, use of antipsychotic drugs commonly used to treat bipolar disorder and schizophrenia such as Clozapine (Clozaril) and Risperidone (Risperidal) may not be effective and according to some clinicians may actually increase the severity of AE symptoms. This varies depending on the type of AE and where patients are in their treatment course. Prior to initiating immunotherapy, these medications are less likely to be helpful and more side effects may be seen.
Once the inflammatory process is being treated, these medications may be essential to reduce suffering from the symptoms of AE and maximizing functioning as patients recover.
Failure to respond to antipsychotics may be a diagnostic clue that the actual cause of psychosis may be due to the autoimmune encephalitis.
How to know if a patient has a psychiatric diagnosis or an actual AE?
Given not all patients with psychiatric issues respond to the first antipsychotic tried, it is important to have psychiatrists involved in these cases to help guide diagnostic and treatment considerations as well as looking for other symptoms which would also suggest AE such as:
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Cognitive decline
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Seizures
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Abnormal movements
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Sleep disruption
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Other neurological symptoms
Hopefully the psychiatrist has experience with identifying autoimmune encephalitis or will consult with a neurologist or other specialist who does.