Diagnosed with Autoimmune Cerebritis-Encephalitis, progression of SLE

Posted by mabachus @mabachus, Jul 22, 2022

I have recently been diagnosed with autoimmune cerebritis-encephalitis as a progression of lupus SLE and wondered what to expect. Most days I feel lost as a symptom. I’m trying to understand the blood brain barrier and is there anything to help close that gap?

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Hi @mabachus and welcome. I added your post to the Autoimmune Diseases group as well. I did this so that you may also connect with others in both groups like @techi @jearanai13 @gingerw and others.

I found this article to be clear and helpful in understanding more about autoimmune encephalitis:
– Understanding autoimmune encephalitis https://www.ohsu.edu/brain-institute/autoimmune-encephalitis

This article by Mayo Clinic neurology specialists offers hope:
– Autoimmune encephalitis: Paving the way to better outcomes https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/autoimmune-encephalitis-paving-the-way-to-better-outcomes/mac-20523925

Mabachus, did I read elsewhere that you are a Mayo Clinic patient?

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This is an excellent question, and there aren't clear answers. As you could see from the links that Colleen provided, the associated symptoms can be quite diverse so it is hard to know precisely what to expect. My SLE first entered my brain when I was 17, and I am now 53. Over that time, I have had almost every possible treatment, from IVIG and steroids to high-dose cyclophosphamide. The great news is that they have come a long way from where they once were, and there are now a number of treatment options. That said, there is a lot of variability in terms of what works for each person so there certainly can be some trial and error. For me, a monoclonal antibody treatment, rituximab, has worked the best with the most limited side effects. It also worked for my mother, who presented with this in her late 70s (although it took some convincing to persuade some doctors that there is a difference between an acute encephalitis and irreversible dementia – until they saw the effect of treatment). It is off-label so it is not the first choice, and insurance is not always willing to cover it (but the pharmaceutical company who makes it may be able to help in those instances). I also needed a more frequent dosing schedule than typical.
Regarding the blood-brain barrier, it still isn't that well understood how the autoantibodies are able to enter the brain. There are a lot of avenues that are being explored. There may be some regional variabilities in the brain. For example, there appears to be less regulation of the blood-cerebrospinal fluid barrier, than the BBB, which may allow for entry of some B cells and antibodies. In addition, inflammation may result in some weakening of the regulation of the BBB. There is always ongoing research into these and other ideas that may lead to newer, better treatments in the future.

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Thank You! I am curious about other treatments, I am currently on Rituxan, prednisone, hydroxychloroquine and IVIg. I am am also curious as to if there is any way to close the barrier

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Anyone have Autoimmune Encephalitis and have had a full recovery. Since 2019 have seizures and no memory.

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@dach

Anyone have Autoimmune Encephalitis and have had a full recovery. Since 2019 have seizures and no memory.

Jump to this post

Hi @dach, I moved your post about autoimmune encephalistis to this existing discussion:
– Diagnosed with Autoimmune Cerebritis-Encephalitis, progression of SLE: https://connect.mayoclinic.org/discussion/autoimmune-cerebritis-encephalitis/

I did this so you can read previous posts and connect more easily with other members like @mabachus @salynn and others.

You might also be interested in these related discussions:
– What type of encephalitis? Autoimmune, limbic, or encephalopathy? https://connect.mayoclinic.org/discussion/is-it-autoimmune-encephalitis-or-encephalitis/
– Autoimmune Encephalitis/ Autoimmune Dementia: https://connect.mayoclinic.org/discussion/autoimmune-encephalitis-autoimmune-dementia/

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