New to Cytoxan (cyclophosphamide)—advice and help appreciated

Sorry to hear about the steroids, but glad that you tolerated the Cytonan. I seems like the steroids don't last that long in your body. Good luck!

Just had a long hospital and rehab stay for a near fatal bout of encephalopathy. Need some info or help or patient experiences about this horror disease. It was never really explained to
me. Am going to neurologist for a follow-up visit soon, but someone who has actually experienced this would help to put me at ease. Most important question is: can this re accure?

Hello @mermaid7272 . I see that you’ve been on Connect before but now have a newer question. I hope you don’t mind, i asked one of the administrators to move your question to the Brain discussion where there are several different discussions on encephalopathy.
I, too, had encephalopathy caused by an autoimmune disease that attacked my brain. You are correct, it was so SCARY! But, I’m doing OK as long as i stay on my drugs
Do the doctors know what caused your encephalopathy?

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.

@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?

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/

Went to neurologist, had numerous docs try to figure out what caused this episode , but with no luck-- they said it was a mystery as the tests showed all negative. This is very scary as they can't treat something without knowing the cause.
I am under major stress that it might happen again, going back to that horrible hospital would do me in. The care I received was appalling, every time I think about it relives the horror of what happened.
Sorry to dump on you, it helps to talk about it.

@mermaid7272 I’m so sorry that I didn’t respond earlier, but i just wasn’t able to. I can only imagine how frustrated and scared you must be. Doctors didn’t pay attention to me either, until i ended up in the ER in bad shape. I have since learned that ER doctors can deal with real emergencies like gun shot wounds and car crashes, but they have never learned the intricasies of unusual diseases.
Can you see if there is a ‘medical center of excellence’ in your area or a university hospital? Ask your doctor for a referral or just call the hospital (like my husband did). You can even call Mayo Clinic and ask if they have and graduates practicing in your area
I really worry for you and want you to find help soon. Will you continue to stay in touch with me?

@mermaid7272 I found this older discussion that you may want to read. Wendy talks about encephalitis which caused her to have many of the same symptoms and experiences as you.
https://connect.mayoclinic.org/discussion/social-media-summit-scholarship-essay-wendy-station/
What do you think?

@mermaid7272 this discussion may be of interest:
https://connect.mayoclinic.org/discussion/autoimmune-encephalopathy-anyone/
You need to try to share your experiences openly on Connect. There are so many just like you! Can you do that?