Cellcept toxicity

[TeenHatesDialysis]

Has anyone experienced Cellcept toxicity resulting in extreme lethargy and/or mouth ulcers? 3+ months post-transplant, Jaclyn has been suffering from extreme lethargy and a mouth ulcer. Her Nephrologists believe it to be Cellcept Toxicity. She was taking 500mg in the morning and 500mg at night. Her dose was cut to 500mg in am and 250 in pm and then cut to 250 am and pm. Can Cellcept toxicity cause creatinine to increase like Prograf toxicity? Her range was .9 - 1.5 (once 1.8 due to prograf toxicity) and then she was released to go home to Colorado and blood labs one week later creatinine of 3.6 (ugh!). We flew back to California and she was readmitted to LPCH at Stanford.

I am interested in any other reasons transplant patients become extremely lethargic post-transplant. In addition to the Cellcept toxicity, Jaclyn is fighting off canker sore in her mouth that exploded into a huge infection. Could have gotten from the donor who was EBV +, but also could have been caused by the cellcept toxicity. Anyone have either of these issues?

Jaclyn had her second biopsy today, the first was at 7 weeks (Perfect results) and this one is about 14 weeks out. She had labs on Thursday and we were notified Friday that her creatinine was 3.6 and to take the next plane back to California. Labs taken as soon as we arrived indicated creatinine 2.5. Kidney must like Cali. BUN 87 and 79....way too high. Biopsy today, results tomorrow.  This has been a bumpy ride to recovery, but she will get there.

Your input is always appreciated. Thank you! 








EDITED:Moved to transplant area-kitkatz,Moderator

[charee]

Sorry i can't answer any of your  questions but i will be asking some at my next neph visit, here in Australia we don't get tested for cellept  so i will be asking why we don't. hope things improve thinking of you

[Sunny]

I hope things improve quickly for your little darling. Sorry it has been difficult for her.

[okarol]

I haven't experienced what you're going through but I have read that some patients get a type of anemia from Cellcept. http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm177397.htm
There is a list of immuno's and more info here http://www.brighamandwomens.org/transplantsurgery/Patient/MaintenanceMedications.aspx#Prednisone

[kellyt]

Around about my 4th of 5th month post surgery my doctor thought I might be getting it, as some lab work was a little strange.  He reduced me from 4/4 to 3/3 and reduced my Prograf a little, too.  That seemed to satisfy him.  Good luck.