My CIDP has gone into remission a few times, if that’s what you mean by “burn out.” The first few times this happened we d/c’d the IVIG completely. My symptoms returned after a few months. After restarting the IVIG my symptoms subsided (they never really completely go away).

The last time I went into remission, we moved my IVIG to 8 weeks instead of d/c’ing completely. After about six months, my symptoms worsened pretty quickly so we did a bolus and then went to every two weeks, working from there to every four. Things seem well controlled so we have moved to every 6 weeks.

I am diabetic and my neurologist worries about the impact on my kindeys when the IVIG is coupled with the diabetes. That’s why we are trying to minimize the dosages and treatments.

As far as IVIG, my treatments take 4-5 hours. For many years I had them done at an infusion clinic, but for the last year they have been home based. I pretend I’m on a long flight and watch TV or a movie or, more commonly, just work on my laptop. I can get up and walk around a little bit pulling the IV pole with me. I get up mainly to use the restroom or grab a snack. Depending on my dosage at the time, sometimes I’ve had to take the next day off of work due to being fatigued.

The change from clinic-based to home-based infusion was dictated by my insurance company. Evidently, they can get the IVIG much cheaper through a mail-order supplier than they can going through a hospital. At first, I was a little nervous, but it has worked out well. An infustion nurse comes out to my house, starts the IV and stays while administering the drug. It’s really more convenient. The mail order pharmacy I’ve been working with (NuFactor) has been great and I highly recommend them.

Oh my, this is terrible. I’ve had no issues with my insurance company (AETNA) approving my IVIG. Best of luck.