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THE HERD October 2019~ 1st edition

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Selected Highlighted News in the field of Autoimmune

Encephalitis October 2019 1st edition

In this Issue~

  • Announcements: IAES and PennNeuroKnow announce Partnership to benefit AE Community, Update on IVIG shortage  
  • Most Popular Article of the Month: Antibody testing reveals dogs can suffer from same autoimmune encephalitis as humans
  • Most Popular Podcast of the Month:  Gaba A + B receptor encephalitis ~3 minutes
  • STUDY Needs Your Participation: Understanding Consequences of Encephalitis
  • Most Shared Post: FAQs Friday- What is Rituxin?
  • Most Popular Quote: And the Moon said to me..
  • Clinician’s Corner: Serum Anti-NMDA (N-Methyl-D-Aspartate)-Receptor Antibodies and Long-Term clinical Outcome after Stroke (PROSCIS-B)
  • Open Access:  Autoimmune encephalitis- Diagnostic and therapeutic decision tree from a psychiatric, neurological and ethico-legal point of view

IAES and PennNeuroKnow (PNK) are excited to announce their partnership to help AE patients and their families understand the science behind their disease.  PNK is a weekly blog run by PhD students at the University of Pennsylvania that aims to break down neuroscience topics for everyone to understand.  In coming together, PNK will receive input from IAES about issues relevant to the AE community and create materials to address topics that non-scientists might have trouble understanding, ranging from general subjects like the immune system to specific practices like FDG-PET scans.  Look for an upcoming blog article introducing the PNK team, and future handouts and blogs about various topics related to AE!

Most Popular Article of the Month~

Antibody testing reveals dogs can suffer from same autoimmune encephalitis as humans

Just Published: Antibody testing reveals dogs can suffer from same autoimmune encephalitis as humans.
Researchers from North Carolina State University have found that dogs can suffer from the same type of autoimmune encephalitis that people do. 3 dogs out of 19 with inflammatory disease were confirmed to have anti-NMDAr AE.
Some of you may remember that Knut the Polar Bear was diagnosed with anti-NMDAr in 2015. The first non-human case. IAES has been waiting to see what research would be uncovered with our non-human friends. A fascinating paradigm shift.  re-visit Knut’s story 

Most Popular Podcast of the Month~

Dr. David Lapides talks about Gaba A + B receptor encephalitis. 3 minute recording.

The survey will take approximately 15 minutes to complete.
This study is being led by Dr. Venkatesan at Johns Hopkins University in collaboration with Dr. Yeshokumar at the Icahn School of Medicine at Mount Sinai.
We would like to invite all IAES encephalitis patients to participate in a study which surveys for symptoms following encephalitis/AE.
While Autoimmune encephalitis may result in the development of a number of persistent symptoms, these have not been well studied. A better understanding of the persistent symptoms in people affected by Autoimmune encephalitis may lead to the development of targeted therapeutic and rehabilitation measures to enhance function and quality of life.
This study will include patients between 18 – 84 years of age who are diagnosed with any form of encephalitis.

Most Liked and Shared IAES Post

FAQs Friday~ What is Rituxan

Rituxan/Rituxamab is an IV treatment for AE that depletes the b cells. AE is caused by auto-antibodies malfunctioning and attacking the brain. Auto-antibodies are made by plasma cells, b cells are plasma cells. These are cells of your immune system. They secrete these antibodies, and if you have AE they target areas, like the voltage gated potassium channel LGI1 and NMDA.

If you don’t have any b cells, then the attacking auto-antibody can-not be made.

This is why rituxan is used in cases where AE is ‘b cell mediated’. Not all AE is B cell mediated. Some are T cell mediated and some are B and T cell mediated. So the doctor will check labs to see if the rituxan has reached its’ full affect and the B cells are at zero. This tells the doctor when he sees how his patient’s symptoms and presentation are, and if the b cells are at zero, just how much of the situation is being affected by the b cells. It can take 2 to 3 months after a rituxan treatment to show effectiveness.

When the b cells come back, the hope is that they will not make these attacking antibodies anymore. When a person has cancer, this is T cell mediated. The doctor is paying attention to how he can affect those. This is much more difficult and drugs like cytoxan are often used in this situation.

In AE, rituxan is a second line treatment after steroids, plasmapheresis, and IVIG. Although some physicians have used rituxan as a first line treatment, depending on the patient’s presentation.

Remember timing is everything! Once a work up is complete and AE is determined by the physician immediate treatment is crucial.

• Key of Treatment
-Complete your work up first!
-Immunotherapy takes time to work – weeks to months with continued recovery for 18-24 months
-Need to treat both inflammation and symptoms
-Goal is to Maximize functionality – symptomatic treat also essential

• Timing is everything…
-Timeline of symptom “control” vs “relapse”
-Post IVIG?
Lasts up to 120 days
-Post IV steroids?
“self tapering” (as instructed by physician)
-Post Rituxmab?
2-4 months to “sweet spot” for B cell depletion
Quick improvements but quick declines

• Second Line
-Rituximab (Antibody to CD20)
Removes B cells and plasmablasts but not plasma cells (antibody factory)
Does not work immediately- delayed onset of action, improvements usually 2-3 months later
Need to continue bridging with IVIG, steroids, and symptomatic therapy

• Maintenance
– Rituximab
Standard dosing every 6 months
Follow B cell repopulation and response to determine ultimate dosing frequency if responsive
-Mycophenolate mofetil
Resource of this information was gathered by Dr. Sarosh Irani of Oxford in his presentation titled:
“What is being done to improve Autoimmune encephalitis for the future?” and Power Point Presentation – Treatment of Autoimmune Brain Disorders by: Heather Van Mater, MD, MS Pediatric Rheumatology Duke Children’s Hospital Director, Duke Autoimmune Brain Disorders Program

Most Popular Quote

Clinician’s Corner

Serum Anti-NMDA (N-Methyl-D-Aspartate) receptor antibodies and Long-Term Clinical Outcome after Stroke (PROSCIS-B)

Large study of 583 patients with acute stroke: NMDAR1-abs seropositivity was not associated with functional outcome at one year after stroke, however, high titers (≥1:320) were associated with poor functional outcome. Furthermore, NMDAR1-abs seropositivity was associated with increased cardiovascular risk within 3 years after first stroke, independently from other risk factors.


Autoimmune Encephalitis – Diagnostic and therapeutic decision tree from a psychiatric, neurological and ethico-legal point of view

Very interesting paper from Sabine Müller and Harald Prüss on some ethical issues in the management of autoimmune encephalitis.
In the case of a non-consenting patient with severe mental disorder, although there is often a need for rapid diagnosis and therapy, the symptom picture often leads to a rejection of such measures. In everyday practice, the question then arises as to what extent the expressed will of the patient prescribes the treatment steps or whether a decision against the will of the patient is medically reasonable, ethically justifiable or even required and legally permissible.
Using the example of a complex case of a patient with proven NMDAR encephalitis, we explain the ethical-legal considerations that are relevant to practice, from the initial invasive diagnosis to placement and compulsory treatment. 

– touching on issues of autonomy, coercive treatment, etc.  It is in German, however, Google Translate does a good job. 

Are YOU an IAES angel? Do you love someone with AE? Do you want to raise AE awareness to not just support AE Warriors but lead researchers to finding a cure?  The IAES Angel is someone who lifted IAES upward by ensuring that comfort, guidance and improved health is brought into an AE patient’s life.

IAES Angels are motivated by their Spirit of giving.  They are Champions in raising AE awareness. Your devotion to supporting our mission and improving the lives of those who suffer from AE is felt mightily and immediately put to use. 

When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you this badge and profile frame to place on your Facebook page or Website.  As badges ‘take flight’ heralding IAES has been ‘touched by an angel’, others will take notice and they too may find their wings. Together, we will create a future where AE is eradicated from this world and only referenced in medical history books.

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.

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