My 21 year old son was diagnosed with FSGS. His kidneys are functioning at 100% but his protein level was 7000. His nephrologist prescribed cyclosporin. When we researched the drug there was no reference to treating his particular condition and there was a lot of side effects. My questions are: is this an appropriate drug treatment to lower protein levels? Should he ask for tests to be redone before he takes anything since protein levels were unusually high? My 31 year old son also has FSGS. He is in 3rd stage with 45% function but he is not taking this drug. Same doctor. We are a little confused and appreciate any advice.

Focal segmental glomerulosclerosis (FSGS) is a chronic scarring disease of the kidney. In the situation that you describe, I would be concerned about a genetic cause of the FSGS as both of your sons apparently have the disease. I assume that both of your sons have had kidney biopsies to confirm the disease. There are a number of familial (genetic) forms of FSGS and in some cases genetic testing is possible. Cyclosporine is one the drugs used to treat some forms of FSGS but it is unlikely to be very effective in the genetic form of the disease.

Treatment of genetic FSGS is very difficult and no treatment is recognized as uniformly successful. Use of ACE-inhibitors and ARB agents are commonly used in addition to drugs such as Cyclosporine, but prognosis is often very poor. I suggest that you discuss your concerns with your son’s nephrologist and ask for an explanation of the treatment regimen that is being offered.

You can learn more about FSGS on our web site at: https://www.kidney.org/atoz/content/focal

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