r/CIDPandMe•
Pjarby

CIDP and me

I recently sought out a new neurologist. A very highly respected doctor with Washington University in St. Louis. He’s written published papers on CIDP but I’m having doubts about his plan of action. His plan was 5 days admittance to the hospital for steroids ✔️. Four weeks of weekly iv steroid ✔️. And then ween off by going every other week. I’ve spoken with his team and let them know I have not improved whatsoever. Some days are actually worse. He wants to continue. I did IVIG for 2+years and felt 90% but always had a rash even after 3 brand changes. It was stopped when the rash spread to my lips and put on Vyvgart. Steady living but no improvement. My old nurse from my infusions told me of sub q IVIG may limit side effects. Anyone have similar experiences? New neurologist is opposed to going that route and said I wasted money on IVIG that he would’ve started with the steroid treatment from the beginning!! I’m so confused!
Thank you for being a great group for support, optimism, honesty and advice!!

Posted Feb 25, 2026, 5:51 AM UTC

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