Reply To: New to Cidp? I think?

Dana

I agree the ivig is an inconvenience, as I get it over 2 days every 2 weeks. I have only had 4 or 5 outpatient infusions and I am still unsure if it is really working but the neurologist says it will take time and to be patient. He has stated that the hope is the disease burns itself out while getting the IVIG and steroids and that the body repairs itself slowly over time. I have been approved for 6 months but he wants to give it a year providing things don’t go in the wrong direction. Not sure if the area you live in offers in home infusion? I have a home health nurse who comes to my house and retreat to the basement for about 4hours but at least it is at home.

My neurologist has not mentioned Cellcept but has already brought up rituxan. I think he is thinking further out which I really appreciate if the IVIG and prednisone don’t work. Both cellcept and rituxan scare me as I have two young children at home ages 4 and 1 who are always sick with some illness.

As if this illness isn’t enough to deal with my insurance has denied my oncologists request and peer to peer review for the ct scans of my chest, abdomen and pelvis looking for cancer.They deem it not medically necessary. I can’t imagine they would cover the rituxan or the cellcept if I have to go that route.