Reply To: For those who get regular IVIG infusions, how often do you get them?

April 27, 2017 at 10:40 am

Hi Buckeye55

I received my first IVIG treatment in early January when I was in rather sad shape. It helped immensely and I thought I was on my way to “full recovery”. My Dr at the time said prednisone would keep the CIDP at bay and no further IVIG were needed unless I had a drastic flair up.

By late February I thought I was starting to feel rundown, but he insisted I was fine.

By late March, I was extremely fatigued and started to have extreme weakness from the knees on down and had to pull out the cane again.

Finally he sent me for another round of IVIG from April 2-7.

It did lift the fatigue and rundown feeling and returned some strength, but….

I haven’t returned to my early February peak.

From the knees on down, I still feel semi numb and my feet hurt after a few hours at work. And I definitely have some minor motor control issues with walking. My knees feel weak and my right foot likes to catch in things causing me to stumble.

Additionally, my arms are semi numb from the elbows through my fingers and my dexterity in my hands is like 20% off.

I found a new doctor in the meantime. He is having me go through another 5 day round of IVIG next week and then a maintenance round every 5 weeks thereafter.

He said I had regressed pretty far when I had my IVIg treatment in April, but he seemed confident that next week’s round and subsequent maintenance treatments should bring me back to 90% of my former self.

I hope so. While I appreciate the increased strength and energy, the numbness and motor control issues make work an 8 hour ordeal.

Good luck and I’d be on the phone with your insurance demanding to know why your health suffers because of a clerical mistake.