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Neuropathy or CIPD???

Neuropathy | Last Active: Sep 13 8:53am | Replies (24)

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I have CIDP. It was not diagnosed correctly for 2 years after symptoms started, tingling and numbness in lower extremities. I was on IvIg twice and prednisone once. Neither helped. I was then given VyGart-Hytrulo - no improvement after 14 weeks so it was discontinued. My condition has gotten worse over time, mainly fatigue, loss of strength and balance issues. I am being treated at the University of Pennsylvania, one of the GBS/CIDP Foundation International Centers of Excellence. I am now in a drug trial for Riliprubart.
https://www.sanofi.com/en/media-room/press-releases/2024/2024-06-25-20-30-00-2904145
My CIDP is idiopathic - no known cause
There is a newer trial for a drug called Captivate
Good luck finding the help you need.

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Replies to "I have CIDP. It was not diagnosed correctly for 2 years after symptoms started, tingling and..."

Oh my goodness. Sending prayers your way. I am in NJ. Not too far from University of PA. Did you have a fiber skin punch biopsy along with an EMG initially? I did not . Just abnormal EMG. Now they say next step Spinal Tap. Very confusing. I am only 64. Just debilitating as you know. I feel for you. As I said you are in my prayers and if you are up to it please keep e posted. 🙏🏻🤗😇