Weaned off IVIG

March 30, 2011 at 3:53 pm

Perhaps my experience can help with your decision. After diagnosis in September, 2007, IVIG loading dose at the rate of 2gm/km of body weight spread over 5 consecutive days, and a maintenance dose at the rate of 1 gm/km of body weight at three week intervals, and subsequent IVIG treatment for 17 months (October 2007-February 2009), my doctor decided to wean me off of IVIG. At one point, we had discussed perhaps replacing IVIG with Cellcept, but my improvement was such that the cellcept idea was dropped. In February, 2009, we extended the treatment interval to 4 weeks, and then started steady reductions in the amount of IVIG. I had my final dose of IVIG in July, 2009. By that point in time, I had regained 100% of motor nerve function and full strength, and numbness and tingling in my hands and feet had reduced to around 20% of what it had been. Most of the improvement had taken place in the first 6 months of treatment. Subsequent to the end of the IVIG infusions, I’ve led a fully normal life without major problems. My only maintenance medicine has been gabapentin. Since the end of IVIG treatment, I have noticed a very, very gradual decline in residual problems with sensory nerves to the point that many days I have zero reminders at all that I ever had CIDP. My doctor expects the residuals to eventually resolve as well, given progress to date. Thank God, I have seen zero regression. Just for the record, my doctor is one of the leading neurologists and researchers at Johns Hopkins Hospital. As many others have emphasized, everyone is different. Everyone reacts differently to every medicine or treatment, even stuff you buy over the counter. I guess my point is that to date, it would appear that weaning off of IVIG worked for me. However, I would also make sure that I did it in full concert with my doctor rather than try to apply a layman’s knowledge and/or understanding to when or how often you should receive treatment. I hope this helps.