Reply To: CellCept

February 10, 2007 at 8:41 am

Damon – regarding CellCept (currently I take 2 G per day) these are the side effects I have found –
moderate to medium hair loss –
dry, and I mean DRY, skin –
low white blood cell counts, rarely outside low-normal but occasionally –
more frequent need for treatment of sun damaged skin (basal cell removal)
more frequent need for dental hygienist to check gums and mouth health (every 3 mo.)

HOWEVER – it is allowing me to receive less IVIg each month, with a plan to continue weaning me both by amount and interval. (The hope being to eventually control CIDP by CellCept alone) – I seem to be less fatigued and more normally active throughout the day and also further into my 28 day IVIg cycle.

I received PP as my first treatment when I was diagnosed, followed by a combination of IVIg, prednisone and Imuran. I have since been weaned from prednisone -which kept me from being bed-ridden – and I am off Imuran. During the 2 years I took Imuran, we tried several times to lower amount or vary timing of IVIg – each time it was a bad experience. When my neuro would ask me if I were getting better, even by a little bit – I could only answer that I was holding my own.

CellCept has allowed my to see what it was they were looking for with Imuran. It is not a rapid result, but one where you must evaluate from three month and six month perspectives.

I don’t know if CellCept will work for me long term, and/or if I will accumulate more (or more dire) side effects. But for now, it has changed things for me. I hope you can get a good result from it!
Hope this helps, Bonney