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the herd newsletter logo bi monthly - THE HERD July 2019~ 3rd edition

Don’t Be Left Behind. Keep Up With THE HERD!

Selected Highlighted News in the field of Autoimmune

Encephalitis July 2019 3rd edition

In this Issue~

  • Upcoming Events: U.K, Worldwide Plasma Donation Drive
  • Most Popular Video of the Month: Autoimmune Encephalitis can mimic Dementia Syndromes
  • Most Popular IAES Printable Handout: Cat in the Hat on Autoimmune Encephalitis
  • Most Shared Post: Recognize Psychiatric Symptoms in AE
  • Clinician’s Corner: Mycophenolate mofetil, Azathioprine and methotrexate usage in Pediatric anti-NMDAR encephalitis: A systemic literature review
  • Open Access:  Autoimmunity in Psychotic Disorders. Where we stand, Challenges, and Opportunities
upcoming events - THE HERD July 2019~ 3rd edition
Brain Damaged Baron - THE HERD July 2019~ 3rd edition

‘Walk with the Baron 2 – Revenge of the blisters’  3rd August 2019, to raise awareness for acquired brain injury and raise money for Ashby ward. This involves walking, running or cycling 26 miles (or however much you can manage). Staff from Ashby Ward will be meeting at The Plough on Newark Road at 10:00am and setting off together to start this 26 mile event! Joining the staff will be ex patients of Ashby Ward and their relatives, as well as the Baron himself, Andy Nicholson.


IVIG donate plasma IAES - THE HERD July 2019~ 3rd edition

We are currently experiencing a plasma shortage in the U.S.A. and Worldwide. There simply isn’t enough plasma available to keep up with demand. This affects all patients with Autoimmune Encephalitis who receive IVIG as a life saving treatment, as well as other patients who require this treatment. 

The need for plasma and plasma-derived products grows each year, but the complex nature of Ig [infusion] products … means that it takes time to increase the supply. It’s not as simple as making a more pill. 

Manufacturing IVIG is complex and lengthy. It takes around six months from the time of the plasma donation to the delivery of the treatment to a patient. Each infusion takes a huge amount of plasma to treat an AE patient. ONE patient with ONE treatment of IVIG  takes over 1,000 plasma donations! 

The Solution: Donate plasma and have your friends, co-works, relatives donate as well. 

IAES is encouraging everyone to get involved. Head a plasma drive or just take the time to donate yourself. Become a regular plasma donor if possible. 

Go on the web and search for a plasma donation center near you.  Often plasma donations provide a monetary benefit. 

Until there is more plasma, AE patients may have to wait for an infusion which can result in a relapse of their disease or long hospital stay. Do a ‘simple act of kindness’ and donate today.

Most Popular Video of the Month~

Danielle Bastiaansen video article - THE HERD July 2019~ 3rd edition

Autoimmune encephalitis can mimic dementia syndromes

Dr. Danielle Bastiaansen at the Erasmus Medical Center, Rotterdam, The Netherlands, outlines the red flags to identifying autoimmune encephalitis to prevent misdiagnosis of dementia syndromes.  Informative video (5:44 minutes).  She outlines the findings in recent research.


cat in hat - THE HERD July 2019~ 3rd edition

Most Liked and Shared IAES Post

kitten psychiatrists recognize psychosis as AE 1 - THE HERD July 2019~ 3rd edition

Recognize Psychiatric Symptoms in AE

Psychiatrists are often the first doctors to see AE patients, along with ER physicians. IAES has a section of Medical Research on our website dedicated to educating Psychiatrists about AE, the psychiatric symptoms that appear, how it mimics bipolar disorder and schizophrenia and recommends that all patients with first time psychosis receive a lumbar puncture to accurately diagnose the cause of their symptoms.


image 20 - THE HERD July 2019~ 3rd edition

Clinician’s Corner

Mycophenolate mofetil, azathioprine and methotrexate usage in paediatric anti-NMDAR encephalitis: A systematic literature review

Despite the absence of definite treatment guidelines, in recent years a number of expert recommendations have been published on immune therapy for anti-NMDAR encephalitis. First-line treatments usually include intravenous methylprednisolone, intravenous immunoglobulin and plasma exchange. In case of unsatisfactory response or in relapsing disease, second-line therapies are advised, such as rituximab and/or cyclophosphamide. This approach is generally becoming more and more uniform, although major differences between centers and physicians do exist, especially in the use of second-line treatments.

When it comes to long-term immune-suppression, expert recommendations are less definite and physicians’ approaches vary widely as regards the use of long-term therapy or not, the type of agent, and the duration of treatment. Mycophenolate mofetil, azathioprine and methotrexate, generally referred to as steroid sparers, are widely used for prevention of transplant rejection and in a large array of autoimmune diseases, including rheumatologic, dermatologic, gastrointestinal and neurologic conditions. The utility and safety of these agents in pediatric autoimmune encephalitis have not been thoroughly explored yet. In this context, we carried out a systematic literature review with the aim of collecting available data on the use of mycophenolate mofetil, azathioprine and methotrexate in pediatric anti-NMDAR encephalitis, with focus on the most frequent modes of use, safety and efficacy.



image 15 - THE HERD July 2019~ 3rd edition

Autoimmunity in psychotic disorders. Where we stand, challenges and opportunities

The idea that autoimmunity may play a role in neuropsychiatric disorders began to take root in the last decade. Dr. Dalmau was the first to describe a group of patients with paraneoplastic encephalitis associated with teratomas. After developing prodromal symptoms such as fever, headache and nausea, patients presented with a variety of severe psychotic and neurological manifestations, including anxiety, delusions, mania, short-term memory loss and seizures. Extensive analysis showed that serum and cerebrospinal fluid (CSF) contained antibody reactivity towards neuronal tissue, which was also present in the tumor. Autoantibodies reacted specifically against the NR1 subunits of the NMDAR. After immunosuppressive treatment and tumor resection, most of the patients recovered completely, regaining their normal social behavior and cognitive abilities in the absence of any remaining neuropsychiatric manifestations. This previously unassociated collection of symptoms was termed autoimmune encephalitis.

The identification of neurological manifestations could serve to better characterize this specific subgroup of autoimmune mediated mental disorder patients where psychotic manifestations are very pronounced, masking the neurological abnormalities. It is also important to mention that several neurological side effects including parkinsonism, akathisia, tardive syndromes, seizures and cerebrovascular events are often observed in patients on antipsychotic drugs. These neurological complaints can overlap with neurological symptoms due to an autoimmune reaction and be mistaken as purely a side effect of the drug.

Take home message

  • To date, pathogenic autoantibodies targeting neuronal surface antigens are very rare in psychotic disorders without any form of neurological manifestation.
  • Awareness from psychiatrist of the existence of symptoms which overlap between autoimmune encephalitis and psychotic disorders is essential to prompt early diagnosis and intervention for cases with an atypical disease course.



mission2 - THE HERD July 2019~ 3rd edition

Your donations are greatly appreciated. Every dollar raised allows us to raise awareness and personally help Patients, Families and Caregivers through their Journey with AE so that best outcomes may be reached. Your contribution to our mission will help save a life and improve the quality of lives for others.  Be a part of the solution by supporting IAES.

International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. 


Driven by the knowledge that “Education is Power”, Int’l AE Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones on Face Book, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

image 23 - THE HERD July 2019~ 3rd edition

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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