I was recently diagnosed with Primary FSGS tip lesion. I was placed on 60mg of Prednisone, along with Lasix, Lisinopril, and potassium. After consulting with my nephrologist and researching on my own, it is my understanding that tip lesion is quite rare and does not have a standard treatment protocol. My question to you is based on current research and information available what type of treatment and length of treatment would you recommend? If I were to seek a second opinion, what doctors in the U.S. have the best understanding about FSGS tip lesion?

Focal segmental glomerulosclerosis (FSGS) is a chronic scarring disease of the kidney and has five different pathological classifications including “tip lesion or variant”.  You are correct that there is no universally recognized treatment for FSGS. The most common treatment is to use ACE-inhibitors or ARB agents with diuretics as needed.  Prednisone (steroids) are commonly used to test the response.  If someone responds to steroids, this is a good prognostic sign.  If no response, then prognosis is not as good.

Neither I nor the National Kidney Foundation provide referrals for care.

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