Reply To: Subcutaneous IG Info Needed

July 21, 2017 at 4:42 pm

The first protocol they tried on me was a high dose of Prednisone for six weeks in 2013, and it seems that’s what they do with most CIDP patients. On the one hand, it makes sense because Prednisone is utterly inexpensive. However, I think it’s counterproductive. I haven’t met one yet that Prednisone works for. It nearly destroyed me, and I still don’t feel I’ve ever quite bounced back from it. The IVIG did help me to improve, but I’ve never gotten to the level of health I enjoyed BEFORE they put me on Prednisone. I hope the sub-q will be approved by the FDA for use with CIDP patients soon, though I don’t know whether to expect that to happen in weeks, months, or years.

I had an acute attack this time last year and my legs were mostly paralyzed. I spent the better part of May and June in two hospitalizations (five treatments of plasmapheresis did nothing to help me) and a week in a skilled nursing facility, and I was only 55 at the time.

I’ll have you — and all CIDP patients — in my prayers for effective treatment and recovery of abilities. I hope you can leave the nursing home soon and get back to your life.