IVIG treatment

March 10, 2011 at 2:23 pm

I started treatment for CIDP on October 1, 2007 with the 5 day loading dose. Even though I was in my early 60s at the time, I had been very active and in excellent physical condition. Steps had become a major problem, I could not stand for even a single full minute, and on the few trips I took, I required a wheelchair in the airport. I noticed no improvement after the loading dose, and no improvement after the next two maintenance doses given at three week intervals. However, after the third interval dose, I noticed improvement, and within the next several months I recovered 100% of my motor nerve use. I just returned from a ski trip to Colorado, if that gives you some idea of my recovery. I still use gabapentin because there is still some nerve discomfort, although that too has resolved to about 98% of normal. My doctor discontinued IVIG in July, 2009. I was not treated with corticosteroids. My doctor, who is one of the lead researchers and experts at Johns Hopkins, told me that 40% of CIDP patients have an excellent result with IVIG, another 40% show some improvement, and approximately 20% show no improvement at all. CIDP affects each of us differently. IVIG and other treatments also affect each of us differently. Starting out with ONLY IVIG would appear to be a common protocol. IVIG has been shown to have far fewer adverse effects than steroids. An expert’s opinion, preferably from one of the approved Centers of Excellence, may be something you should consider. I certainly consider myself extremely fortunate to have had a favorable outcome because, as you can see from the posts on this website, many do not. But I also credit an extraordinarily knowledgeable neurologist and excellent treatment protocols at Johns Hopkins for my recovery. I hope this helps.

ivig treatment

September 11, 2008 at 12:32 pm

well i finished my treatment…I had 2g/kg in 3 days. The first day went well, the 2nd day got a headache, yesterday was not good my haedache worsened my whole body ached and I had troubles walking. I couldn’t get out of the car I hurt so bad and slept for 3 hours.I still have the bodyaches and headache. How long does this last?

feeling crappy,

IVIG treatment

August 6, 2006 at 5:11 am

Hello to all. I was diagnosed with GBS in 1990 and after years of suffering chronic fatigue new medical exams and visits diagnosed CIDP this february 2006. My first IVIG treatment was in april and after that a slow recovery came…just until last week, on July 29th I had a relapse episode that took me straight to another IVIG treatment. Every three months? ๐Ÿ™ Honestly I thought it would’ve kept me “preppy” for longer. My neuro suggests I monitor my strength (and weakness) to program future IVIG treatments. Prednisone is now my daily meal… we’ll see what the future beholds! ๐Ÿ˜€

Thank you all for the gret info on this forum. I am sure learning a lot about CIDP!

Nancy (Italy)