Reply To: IVIG Shortage

Hi Micah,

As a fellow Bay Area resident with CIDP, I thought I’d chime in here. It took 3 different physicians, but once I finally switched to one that works for one of the GBS/CIDP Centers of Excellence, I was properly diagnosed with CIDP in July, 2018.

My previous physicians has prescribed various doses of IVIG (something I had already been taking for a primary immunodeficiency…lucky me!). Unfortunately, no dosage of IVIG worked against my CIDP.

My current physician prescribed two things:
1) Prednisone, starting at 60mg per day and tapering over time
2) a regular, massive dose (100g) of IVIG every 3 weeks. When my veins started becoming harder to access, I made a life-changing transition to SCIG, and now I’m infusing myself once a week (30g).

Almost instantly after starting the Prednisone/IG combination, I started getting better (after 8 months of feeling lousy and weak). Now, my Prednisone dosage is down to 2.5mg per day, but I’m still getting 30g of SCIG per week. My strength is back to 100%, and I’m feeling great!

I don’t know what the future will bring, but I’m very optimistic!

Best of luck to you.