← Return to New to Cytoxan (cyclophosphamide)—advice and help appreciated

Discussion

New to Cytoxan (cyclophosphamide)—advice and help appreciated

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

Becky-- My encephalopathy has returned. I am scared, disgusted, and horrified.
The doctor, a neurologist at a large hospital is setting up a IVIG treatment for me. I hope it will be soon, and also hope it will help.
Anyone here dealing with multiple returns of this vicious disease, does it ever stop?

Jump to this post

Replies to "Becky-- My encephalopathy has returned. I am scared, disgusted, and horrified. The doctor, a neurologist at..."
Becky, Volunteer Mentor | @becsbuddy | Jan 15, 2022

@mermaid7272 I’m so sorry to hear this—it must be very frightening. Have you been diagnosed with a cause of the encephalopathy? You had said that you were tapering off of prednisone, is that correct? There are so many new autoimmune diseases being diagnosed—faster than doctors can learn how to treat them!
I really want you to go to this discussion group and read what other members have experienced.. Then you can post questions there
https://connect.mayoclinic.org/discussion/autoimmune-encephalopathy-anyone/
Maybe these members can help @tanap1 @techi @valm by telling you of their experiences and what has worked for them
Have you asked for a referral to a neuro- immunologist?

VIEW AND REPLY
Becky, Volunteer Mentor | @becsbuddy | Jan 18, 2022

@mermaid7272 i know that your MRI is tomorrow. You are going to do just fine, i have complete faith in you! You’ve come a long way with this encephalopathy and you need some answers. Do your best to relax.
We’re all holding hands with you as you go through the MRI. I’ll send lots of good vibes! Becky

VIEW AND REPLY