Reply To: IVIG roller coaster

June 11, 2012 at 4:10 pm

You sound a lot like myself.. I initally was scheduled to get IVIG every 3 weeks after the loading dose (felt improvement after the first loading dose/however I only had a 3 day loading dose – unsure of the dosage). It REALLY kicked in and I felt AMAZING after that 2nd IVIG.. Anyhow I would feel it start wearing off 10-14 days after the infusions.. and woudln’t know how much I would decline until I got my next infusion.. finally I got a cold from my kids, had a relapse and they moved it up to every two weeks with an increased dosage.. If i don’t get sick from my kids (which I seem to quite often right now).. it lasts me ALMOST the full two weeks.. if I get sick it wears off quickly.. I have only gotten one loading dose… from what I have been reading on here, I may need to get more to get back to where I was that 2nd round.. From everything that I have read ALS/MND does not respond at all to IVIG! Good luck!