Nephrotic Syndrome

[Lanie_b]

HI All,
I have had Nephrotic Syndrome for six years now. Here is a list of medications I have been on, non of which have worked.

Pregnizone
Cyclosporine
and Now Cell Cept.

Is there any other method out there that may help, or with trying. I am 26 years old, and i feel better with out being on any medication. Cell cept has me throwing up alot, has any one else experienced this side affect? I am only on 500 mg twice a day and my dr wants to take me up to 750? So im assuming this is going to make me feel even worse.

Thanks for help.

[shimmer_glammer1995]

hello, my name is brittany and i am 13 years old. ive had nephrotic syndrome since i was 2, so about 11 years. i have been on every medicine for ns, but it never worked. i have been on all 3 of your medicines that you have listed. i am currently on the cell cept( i call it myfortic) and yes it does make you very sick. i used to wake up every day puking, and there not sure if it is because of the medicine. they did a colonoscopy and an endoscopy and said it wasnt from the medicine, but idk. im still on it, and still getting sick just about everyday, i cant even go to school have the time, and it still isnt helping. i have been on...1.prednisone (i believe that is the medicine you first said, if it wasnt, i havent been on that one!) 2. prograf(it gave me an acute kidney failure, so they took me off of it) 3. nerol 4.myfortic 5. they also tried a thing called plasma pheresis(sp) they put a catheder in my chest and it is somewhat like dialysis but not. they tried that for about 6 weeks, still nothing. although, i thought it help, but it turns out that my kidneys are detererating, and that is y i am peeing so much. my mom asked about a transplant and my doctor said it might help. i have no other options and have many other medical problems. i hope you dont turn out like me, i will pray for you(it seems like when i pray for someone, they get better, just never gets me in return.)

[littlelayla]

Hello Brittany, I am new on here and to Nephrotic Syndrome, My daughter Layla who is 3 was diagnosed 20th july 2009,so far the treatment is going ok but we know it is early days yet.
I just wanted to say that you are such a brave young lady !!!!!!!! and that we will pray for you. x

[stefflynn3]

my son is almost 8 and has this and he take a medication called prograf. He also has to take steriods on top of it. Hope everything works out for you