My daughter was started on IVIG at the Mayo Clinic. They gave her 22 grams twice a week for 6 weeks. After the six weeks, they changed it to 22 grams once a week and she has been on that schedule for 2 1/2 years. They felt that was being pretty aggressive. I think PE will be the next option if they find it is CIDP.

When she first had problems they thought it was CMT. Had all the tests and they came back negative. No one on either side of the family has it. So we went to Mayo to get a second opinion. They thought it could be CIDP and that is when they started treatment. They are very confused because she was declining rapidly at the beginning until the IVIG – but she then did not improve. The Mayo clinic is confused now because there are things that point to CIDP and then other things that suggest CMT. They wanted to get the nerve biopsy done and then do EMGs on my husband and I to see if either of us has any problems. They do not expect to see anything with us. If it is CIDP then they feel they need to get more aggressive. If it is CMT, then we need to get her off the medication.

My daughter has been on IVIG – 22 grams per week for the past 2 1/2 years. She remained stable, but did not improve. A year and 1/2 ago Cellcept was added. She continued to remain stable, but her last appointment which was last week, her hands have improved. We don’t know if it is the Cellcept finally kicking in or what. She has never been sick since being on the Cellcept and she was away at college last year with a community bathroom. The only thing that she has had is occasional diarrhea. She is going to start taking Prilosec for that. She has been very lucky because she has never had a reaction to the IVIG and doesn’t even have to premedicate prior to the infusions. She just had a nerve biopsy yesterday to see if they can tell from the nerve if she has CIDP or CMT.