Reply To: IVIG roller coaster

My daughter had the up & down ride for awhile. We finally figured out she needed treatment 3 days before her symptoms showed up. CIDP is attacking your myelin before your symptoms appear.

At one point she was having symptoms 10 days post infusion. We did a loading dose & then put her on weekly infusions. She did that for a LONG time – about a year. We have gradually moved her infusions apart & she’s now getting them every 5 weeks & we will soon be going to every 6 weeks.

My recommendation would be to talk to your dr about doing another loading dose (so you can get back to baseline) & then start weekly infusions again. It sounds like your body wasn’t quite ready to go longer between treatments.

ALS does not respond to IVIG because it is not an autoimmune disease.

Kelly