I too have been ‘up & down’ the benedryl scale?

August 27, 2010 at 10:02 pm

Combined with the Tylenol scale too! Each doctor has their own approach to how much to administer, and…how often. Keep a singular specific diary about when you feel ANYTHING Good during or after infusions, then WHEN #of days afterwards something comes ‘back’. That way your doses can be tailored or your infusion schedules be adjusted.
For example? Day 8, concrete feeling in legs returns, can’t walk far w/o rest; or, day 11 pins&needles at fingertips; day 16 pins and needles whole hand and wrists. You get the drift. It helps the docs get a handle on how much is working and for how long.
It’s frustrating at first, but with some adjustments you mite just find the right combo of Benedryl and Tylenol then Doses of IVIG to work best for you!
Keep trying and keep faith that this mite actually work!