Reply To: Six Weeks Off of IVIG – Hoping For Remission

Thank you all so much. I appreciate your well wishes,

When I started IVIG a couple of years ago I was in terrible pain and my legs and feet had gone numb. The IVIG helped almost immediately. My pain became manageable (with the help of 450mg of Lyrica a day — which I still take), and I got most of the feeling in my legs, and some in my feet and toes back. I did get some flare-ups of pain and numbness over time, but nothing permanent. I never sensed I was deteriorating between infusions. My neurologist did tell me I need to scale back my work demands and stress to give me the best chance at remission, but that has been difficult for me to do so far. I had an EMG/NCV in January and will have another one in April. If I am in remission I will then follow-up every six months and then yearly if I am stable.

I asked my neurologist if there was anything in particular I should be wary of, like an increase in pain. He told me pain is not necessarily a negative indicator; in fact, it can signal an improvement in nerve function. He cautioned me that I should return immediately if I noticed any increase in numbness or weakness, which would be signs of loss of nerve function. Since he is in New York City and I am in western Pennsylvania, I have an incentive to return to see him only if really necessary.

I believe my neurologist’s quick diagnosis and aggressive IVIG regimen stopped the progression of my CIDP, and I actually showed improved nerve function throughout the time I treated. At this point my IVIG is “suspended”, not “discontinued”, for insurance purposes.