cidp concerns

Anonymous
September 19, 2009 at 8:20 am

Hi Kate,

Sorry to hear that you’ve had to join our group………….

It took 8 months to get a diagnosis, and yes I opted for a 5 day IVIG treatment done in the infusion unit at the hospital. It took a month to get the insurance to approve it, probably because of the back and forth paperwork from the drs. In that month, I went from using a cane to being in a wheelchair. However, the docs had a diagnosis that they were positive of.

I have had no side effects from the IVIG, and thanks to this site, learned all about the infusion rate, amount, etc.

I had my last 5 day last November, had a 1 day a month for Jan and Feb and didn’t need anything until a little relapse this month which a 1 day took care of. BUT, I was put on prednisone also, and don’t know if that helped or not………..I had more side effects from the prednisone and am now down to 3 mg and still decreasing, hoping to get off it all together.

Hope this helps in your decision. Good luck!!

Dawn