Quote:
Originally Posted by crstr
I have been on ivig every other week since January 2010. I am noticing less cramping but the weakness seems to have started increasing. This is the first time I have read about it in posts and I thought..wow...is this happening to others or have I just missed it before now?...
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Hello Christine,
I have been diagnosed with MMN Jan. 2010. The doctor also gave me IVIG and after the first dose, (of two.) I got AMS, (Aseptic Meningitis Syndrome.) 4 month later, the doctor suggested a different brand of IVIG, given over 5 days, 20% each day. After the 3rd dose, I got AMS again.
A different doctor, advised by my first neurologist, prescribed, Hizentra, given subcutaneously, at home.
I started, 7 days of 3 grams, (15ml) 2x a day, the first week, then 2x a day, twice a week. I did we'll on it, but after 8 month the doctor up't the Hizentra to twice a day, 3x a week. And since October of 2012, he up't the Hizentra to 4x a week, twice a day. I live in Michigan and go to U of M. The doctor now is advising for me to consider Rituxan. I also have a a elevated protein in my blood.
The Hematologist and the Neurologist think MMN and this elevated Protein may be related, not sure however. It seems the Hizentra works well, but need more as time goes on. It is also very expensive, my insurance and Medicare pays most of it. I am worried trying Rituxan since I could not tolerate IVIG. Would like to hear from you and others?
Maria