Hello, I’m a 41 year old woman who has had nephrotic syndrome for the last 3 years and I have just been diagnosed with FSGS as well. My creatinine is 124 and my GFR is 41. I have not responded to prednisone and tacrolimus is not working either. I have been told I’m not a candidate for chemotherapy type drugs as I have a poor response to steroids and have been told I will have renal failure in 2-5 years.

Focal segmental glomerulosclerosis (FSGS) is a very common cause of kidney failure and is very difficult to treat.  Many do not respond to treatments.  Your history is very consistent with the diagnosis of FSGS and you may have to consider kidney transplantation as well as dialysis as an expected outcome.  You can learn more about FSGS on our web site at: https://www.kidney.org/atoz/content/focal

 

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