looking for people who have had autoimmune nmda encephalitis

[Pacient1804]

Hello! my sister's name is Ellina, she is 16 years old. She has been in the intensive care unit for 4 months. The first month she was diagnosed with coronavirus meningoencephalitis. Then the doctors could not determine the diagnosis for a long time, but through the established autoimmune nmda encephalitis. the treatment does not bring any results, 3 days ago they started using the drug retuximab. wanted to know your experience of the disease. this disease has not been studied in Russia

[Littlefoot19]

Good morning,

Firstly, I just wanted to say hi to both you and Ellina and send you lots of love from England.

Whilst I don't have experience with Ellina's exact diagnosis, I have recently left hospital for treatment of NMDA Encephalitis due to an ovarian teratoma (the word teratoma is greek for monster so here's a warning before googling it!). I am still undergoing steroid treatment and can really empathise with how you both must be feeling. I spent a month in hospital and can't remember much from my time there at all. It's been really difficult at times - but please know that it will get better.

I didn't have any rituximab treatment and instead had surgery and steroids, but I have read some really positive things on medical journals/ forums etc - and there may be other people on here who can help provide more information about their experiences with rituximab specifically.

My mum is currently reading the book Brain on Fire by Susannah Cahalan who experienced NMDA Encephalitis (en.wikipedia.org/wiki/Brain... which gives an insight into someone's experience with the disease. I'm not ready to read the book myself yet as I'm still recovering so Ellina might not be either but it might be something that helps you / your family?

I can also recommend the Great Ormond Street Hospital Website (it's a wonderful children's hospital here in London) and they provide some more online information / stories from teenagers that Ellina may like to read (their main website is gosh.nhs.uk).

Hope that helps a little, and always here if you have any other questions.

N

[Pacient1804 in reply to Littlefoot19]

Good morning, thank you so much for your kind words! We wish you a speedy recovery! Be sure to pass on your wishes to Ellina when she regains consciousness. I would also like to ask you how you came back to consciousness? Simultaneously or gradually?

[Littlefoot19 in reply to Pacient1804]

Thank you ♥️I was never unconscious but I began to recover my awareness of my situation a week after my surgery. So I’d say it’s been a gradual process in terms of getting to grips with what actually happened to me.

[alpappy in reply to Littlefoot19]

Hi I was diagnosed with NMDA encephalitis caused by a teratoma three years ago in New Zealand I was treated with Retuximab and steroids Steroids I was given just a few days to live but recovered I am left with big holes in my short to medium term memory Also I have lost smell and taste besides sweet and salty The first year I had a few falls but none since then Every two months I have bad spell when I forget most things and it takes a few days of rest and good sleep but recovers I really feel for her but normal or almost normal life is possible I drive when I am sure I feel Ok and have learned to write lists of what I need to do Best of luck and I can assure you there is life after encephalitis

[Pacient1804 in reply to alpappy]

Hello! Thank you very much for responding! We wish you a speedy recovery. I want to ask you, if it is not difficult for you to answer, with what dose the effect of retuximab began?

[alpappy in reply to Pacient1804]

Sorry I dont have a copy of the hospital notes

[Ocean96]

Hi Pacient1804

I was diagnosed with Anti-NMDA Receptor Encephalitis three years ago so hopefully, I will be of some help. First of all, I'd like to say how sorry I am to hear your sister has been diagnosed with this disease and is so unwell. Also, my heart goes out to you and your family, I know it can have a major impact on the patient themselves and the family around them.

The Encephalitis Society offers great information, fact sheets, and videos. Here's the link - encephalitis.info/nmdar-ant...

I'm going to link a story of someone who had NMDA Encephalitis and hopefully it will offer some hope - encephalitis.info/hannah-blog2

If I can be of any extra help please let me know

All the best

[Pacient1804 in reply to Ocean96]

Hello there! Our family is very grateful to you for your helpful links and kind words! Thank you for responding! We hope that this nightmare is over and will never happen again. If it is not difficult for you, I would like to know what methods were used to cure you? Have You had any experience in the application of rituximab? How did you come to your senses, abruptly or gradually?

[Ocean96 in reply to Pacient1804]

Of course no problem!

I had various treatments over a four month period including a IVIG and steroid infusions, 13 rounds of plasma exchange and Rituximab and steroid infusions. Then when I left hospital I was on cellcept 500mg twice daily (tablet).

I came around quite abruptly after about 3 months in hospital and after receiving my second infusion of Rituximab! It took time to fully come around and months of rehabilitation.

I still now suffer with headaches, sensory overload and fatigue but it’s something that has improved over time and something I’ve learned and I’m still learning to manage!

There is hope and never give up!

[Pacient1804 in reply to Ocean96]

Thank you for your answer! Today, exactly 4 months as Ellina in intensive care, and yesterday there was a 2 dose of retuximab! During this time, she changed 5 hospitals, and moved the flight from Siberia to Moscow! Let's hope that retuximab will help. I wish that encephalitis for you remained just a memory!

[Ocean96 in reply to Pacient1804]

I hope Ellina is doing well as well as you and your family! She sounds incredibly strong and brave! Thank you for sharing your story and thank you for your kind wishes!

[NebraskaTexas in reply to Ocean96]

My husband had similar treatment that you mentioned above. He just had a relapse of encephalitis and his second treatment of Rituximab. You have given me hope for his improvement. Thanks.

[Ocean96 in reply to NebraskaTexas]

Hi! I’m so sorry to hear that. I relapsed last year and I’m on regular Rituximab infusions, I find Rituximab works for me and I hope it works for your husband too! Thanks for sharing your story

[Pacient1804]

Hello everyone! Are there people who have not been helped by retuximab in the treatment of nmda encephalitis?

[Dublinboy78 in reply to Pacient1804]

My daughter had sero negative autoimmune encephalitis. Ritixumab didn’t work for her so she’s been treated with tocilsumab and is doing really well.

[Pacient1804 in reply to Dublinboy78]

Thank you so much for your reply! We told the doctors about tocilizumab, but they are sure that rituximab helped, and now there are consequences of the disease, but it has no dynamics, I don't even know what to do..

[alpappy]

Retuximab saved my life with plasma forests and steroids

[AliBBeerDrinkerSing]

I know I’m a little late to the game, but I believe I had the same treatment, including plasma exchange. I’ve been out of hospital about 4 months and am still on a lot of meds- btw I’m a 28 yr old female writing from the UK! I have no memories from most of a year’s stay in hospital, but had some wonderful medical staff looking after me and if you could pick a year to lose your memories, I picked a good’un 😜 recovery is slow but steady I’m still not ready to go back to work or drive (had lots of seizures) but am enjoying exercise and slowly getting back to normal- whatever that means!

[Pacient1804 in reply to AliBBeerDrinkerSing]

Hello! Thank you so much for your response! I wish you a speedy recovery! Ellina has been with her mother in a rehabilitation clinic for a month, she has a positive dynamic, she can walk with support, perform simple actions, write words on paper! There are still a lot of problems, there are bad days! But we believe that it will come back to us!

[AliBBeerDrinkerSing]

That seems pretty good to me! My recovery was much slower, but have just come back from my first four mile race, might not be much to some people, but is a miracle given a year ago I literally could wave at my fiancé down a video call- when he first came to visit I thought he was a footballer!