Hsv and autoimmune E

[Majaa]

Hello. My brother is finally receiving his first dose of immunotherapy tomorrow, the medicine in question is rituximab. What kind of change can I expect after that?

Should we insist on something else?

[RainthenSun11]

Hi majaa, hope you are going ok.. Has your brother had any ivig yet or steroids? From what I understand rituximab is a second line treatment?

[Majaa in reply to RainthenSun11]

No, nothing but acyclovir for Hsv1. This is his first therapy for autoimmune encephalitis.

He was diagnosed 40 days ago, and since then we have been waiting for the drug to be approved, for it to pass the commissions... Today he is receiving his first dose.

[NebraskaTexas]

Majaa, I'm sorry to hear you that your brother is going through this.

My husband has NMDA Receptor Encephalitis and was given Rituximab. He had 3 infusions. I remember the doctor and the physician assistant making it very clear, once he received this infusion, my husband would not have an immune system. It would gradually come back and then another dose of Rituximab again. This would go for every six months. After the third infusion the Rituximab did not last the full 6 months, his encephalitis return, and we went to another treatment called Cytoxan.

Please remember everyone is different, so therefore everyone recovery is different.

I hope this helps.

[HSE_Survivor]

I only had acyclovir for HSV and a high dose of steroids to get the HSV virus under control . I never had rituximab .

Are you aware the Encephalitis International charity has professional advisors you could speak to ? They offer support that you might find helpful. You can contact them on:

encephalitis.info/contact-o...

[The_Bass]

Hi @Majaa - hope the first round of Rituximab has gone as planned for your brother. I had two Rituximab treatments about a week apart. Certainly, I was told that my immune system would be compromised thereafter (for a time) – although I’m not sure if that was to do with the Rituximab itself or more to do with the medicines I can taking at the time … but I also heard that some people have the treatment again, others never again – they seemed to know I wouldn’t have it again. Best to ask the experts to tell you as much as they can – it seems to really differ, like so much around encephalitis and its treatments.

All the best to you.

[Majaa in reply to The_Bass]

The first treatment went well, we were told that he will receive 3 more doses. In 7 days another one, then in 14 the second and 21 the third.We were not told anything in particular, except to wait and be patient.

I don't know if we can ask the doctor for anything else, how would you help him?

[The_Bass]

Great to hear it went well. Yes, I think they normally put 7 days between.

I would say, keep supporting. Explain why this is important – it’s worth a try. Personally, I didn’t understand why things were happening to me at times on any level but, as time passed, I appreciated all the help from loved ones and doctors and nurses.

[Bluebird61]

Hi Majaa, how is your brother doing now? After the treatment did you notice good changes? We did for our son after his first dose. He has had 9 total in 7 months

[Majaa in reply to Bluebird61]

I only notice that he sleeps better, he received two doses. I don't know what to think, does it affect him at all, maybe it's still too early for something significant to change for the better

[Gandalf2]

Hi Maja, drugs.com is a good reference site for different drugs - it includes reviews from patients. Best Wishes, G2

[Gandalf2]

Hi Majaa, I'm in my fifth year of autoimmune enc. and things seem to be almost normal again. As long as I'm not stressed or overloaded with information e.g. too many questions at once when I've just got up. Brains are different but a great deal of recovery seems possible given a healthy lifestyle and regular mental and physical exercise. Best Wishes, G2