Reply To: Exacerbation – scared

June 7, 2012 at 11:12 pm

scared too! had my 1st loading dose in February then weekly for 6 weeks then we went bi-weekly and the roller coster started. I started getting bad about 12 days into the cycle and did not see much rebound until about 48 hours after the infusion. I short cycled the treatments a couple of times as over time things degraded. My doc agreed to go back to weekly after my exam this week. I had my “normal” 42g infusion 2 days ago as I was starting to bottom out again. This morning SCARED me as I was as bad as before I started treatment – Barely walk or lift my arms, could not lift a cup of coffee or turn the ignition in the car. I was scared to death that of where the bottom was or if the IVIG had become totally ineffective. True as clockwork the IVIG started to take effect this afternoon and I have returned to at least a mobile state. I went from a fit active gym rat to very weak and at times immobile since last September. Hating this at the moment and willing to go “all in” on a risky bet. Sent my paperwork to Northwestern today for stem cell consideration.