Reply To: IVIG maintenance dosage

Each patient is different. A careful doctor won’t follow a one-size-fits-all formula but will tailor treatment to the individual patient — how severe your condition is, how you reapond to intial treatment, etc. I’m getting 25 grams a day for 5 days each month, which is the maxiumum dose my insurance company will allow for someone my size. My neurologist said he wants me to get this dose for at least 6 months before he does another EMG. I already had severe nerve damage in my legs by the time I was diagnosed (thanks to my pain doctor, who kept telling me for a solid year that I was just “out of condition” and all I needed was more exercise). I don’t expect to ever walk normally again. The IVIG, after two 5-day rounds, has stopped the nerve pain in my legs, which is a blessing, but I’ve regained only a minimal amount of strength so far and my balance is still very bad. My nwurologist says I just have to keep going, and the progress will build month by month. But if I’d been on this regimen for a full year with no results at all, I would ask about moving on to plasma exchange.

Have you had an EMG recently to find out what effect the treatment has had on your nerves?