C1q nephropathy

My doctor told me c1q nephropathy is the first stages of fsgs.. The same thing alonzo morning had. I just started steroids. Lets see if they work.

I was diagnosed with C1Q May of 2009 after a kidney biopsey. I was on high doses of steroids from 6/09 to 10/09. It was very difficult, very emotional and the side effects were awful. My condition seemed to have gone in remission and thats when I was taken off the steroids. I visited my doctor recently for a routine visit and was told my protein levels had shot back up and when I go to visit him in July he will reacces and I might haved to be put back on steroids.

Originally Posted by Deb C

(Topic from archives: Originally posted 14:20:07 07:59:54 08/09/2003)

My niece has recently been diagnosed with C1q nephropathy. The Urologist is not offering much information at this time. We would like to be proactive with this and wondered if anyone has any experience with this disease. Thanks for your help.

[Beth Witten MSW ACSW]

Here's an article that discusses C1q nephropathy, including treatment for it and how treatment needs to be individualized to the patient.
http://www.unckidneycenter.org/kidne...ibrary/c1q.pdf

[ZachAlex]

Just a note to say my grandson has had this since he was 5 years old , he is now 12 . They put him on an ace inhibtor back then and he is still on the same dose today, and surprise he has been in remission the last few years.Just wanted to post this should anyone be interested. I do know of a little girl from North Carolina who had C1Q when she was 3, she got he daddys kidney at age 5 and is doing good.