To Cellcept users,

I had my Thymectomy and first IVIG treatment early last month. Well, the effects of the IVIG as wearing off... and it will be several months until the Thymectomy "kicks" in??? Hopefully. My Neuro is starting me on Cellcept and IVIG treatment this week "in order to buy time" for the Thymectomy. I am looking for comments on using Cellcept. Thanks

I've been on CC for 7 years or so. I guess it does a pretty good job (I'm not without symptoms--sometimes severe). Only real side effect I have had is gastro distress but have learned to manage that pretty well. My labs have never gotten out of whack and I take a large dose--3 grams a day.

Are you aware there is a new black box warning about CC? It can apparently cause the mostly deadly but surely completely disabling disease called PML. You may want to do some searches and discuss with your doctor the risks/benefits before beginning CC in light of that. Some neuros are no longer doing new prescriptions of CC for that reason.

Hope this helps,

Missy

Hello there! I loved Cellcept! I was able to get down from 60 mgs of pred to 15 while I was on it, but I have some other health problems that kept getting in the way, so I"m back up to 60 mgs and on Imuran now......


As for the thymectomy......I was told it would take at least a year before I would see any real results - maybe even 2 years b/4 I saw any........

I know it is super frustrating, but try and hang in there!

Are you feeling ANY better? How are your kids? Your wife?

Just had my plasma exchange - it was pretty awesome! Hate the line placement, but after that it was a breeze!!!!

Erin

Not to great but my girls and wife are doing fine. I have an IVIG schedule for next week can not wait. It really works for me.

Hello again! You'll feel so great after it! I know it works wonders for most of us!!!

Just had my exchange done and am feeling pretty sassy! I'm going to work nexrt week, no matter what!!!!!

Is your doc going to give you the 5 day 400 cc IV IG? That's the one I always get and my eyes look like they've had surgery - good stuff for me!

Erin