Reply To: New working diagnosis of CIDP, starting pred

I started a 6 week run on 60 mg of Prednisone back on June 17, and will do a taper after that. I have been bombarded with steroids for both retinal bleeding (implants in eyes for six months) and after one IVig treat me at the end of March, I had five days of Prednisone in April and six days of Solumedrol pills.

Since starting the steroids, I have put on almost 60 pounds, 21 in the last month. This is all in an attempt to get me walking because the nursing home I am in will not allow the infusion service in for IVig, and the infusion center will not take non walking patients without a full time attendant. This has been very frustrating, because the nursing home is saying it is a liability issue, even though I am willing to sign off on it, as well as the infusion service. The insurance allowed me five day hospital stay for IVig, but it cost them almost $300000 and $1400 for me, plus having to pay the nursing home to hold my room, and when I got back, they had given it away to someone who was admitted to receive IV treatment!

The Prednisone has given me back some strength and a little numbness is gone, but all of the extra weight isn’t helping my ability to walk. I can stand, but haven’t taken any steps yet, as waiting on new ankle brace because to swollen for the old one.

I have been referred to the UC Irvine Neuromuscular Center on August 14, sainting since February for the appointment. My neurologist wants to confirm the CIDP diagnosis and my insurance doesn’t want to pay for any more tests or treatment without confirmation.

All I want is to be able to go home and walk enough to get to the bathroom.