IVIG maintenance dosage

    • April 28, 2017 at 4:32 pm

      Is there an established monthly IVIG maintenance dosage? I have been on 400mg/kg for the last year with no apparent positive results! My neurologist is not an expert on the CIDP subject so am looking for possible input!

    • B
      April 28, 2017 at 11:57 pm

      Here is an excerpt from an article
      “The standard IVIg dosage is a loading dose of 2.0 gm/kg administered intravenously over 2–5 days, followed by 1 g/kg over 1 day every 3 weeks.”

      Here is the article

      Dr. Kenneth Gorson gave a very information talk about CIDP to patients that is posted on this site. (It’s the one that shows the conference room with tables as the first image.


      My doctor followed the above protocol with me, except that I receive treatment every 4 weeks not every 3. My insurance approved every 3. My doctor did indicate that you can’t reasonably evaluate the effectiveness of IVIG until after 6 months.

      Good luck!

    • April 30, 2017 at 3:40 pm

      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?