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New to Cytoxan (cyclophosphamide)—advice and help appreciated

Autoimmune Diseases | Last Active: Jan 18, 2022 | Replies (24)
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@mermaid7272

Thank you for helping me. I always thought I was pretty strong until this happened! And I am VERY comforted to know there are others out here and even better to realize there ARE drugs to help me.
In several days I will go to a neurologist, I hope he will be of help, but have lost faith after my terrible experience. What drugs do you take, if I may impose on you?
I will go to the "Brain'Discussion.

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Replies to "Thank you for helping me. I always thought I was pretty strong until this happened! And..."
Becky, Volunteer Mentor | @becsbuddy | Dec 26, 2021

@mermaid7272 i was finally started on 1000mg of methylprednisolone for 5 nights which woke me up. When i transferred to rehab, i was put on 60 mg oral prednisone which has been slowly tapered up and down. I also started Mycophenolate mofitil in the summer. It keeps the inflammation down without the bad side effects of prednisone. My care is coordinated by a neurologist-immunologist at University of Colorado. She’s great!
I’ve been dealing with this for almost 4 years and I’m learning how to manage my time and fatigue.
Have you checked a university medical center for a good neurologist?

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Colleen Young, Connect Director | @colleenyoung | Dec 27, 2021

Hi Mermaid,
There are
Am I correct in assuming that you are dealing with autoimmune encephalitis (AE), a type of brain inflammation where the body’s immune system attacks healthy cells and tissues in the brain or spinal cord?

I think you might wish to connect with other members dealing with AE in this discussion:
- Autoimmune encephalopathy anyone? https://connect.mayoclinic.org/discussion/autoimmune-encephalopathy-anyone/

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