Nephrotic Syndrome Patient for 15 years

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Hello, my name is Nick. I was diagnosed with Nephrotic Syndrome when I was 2 years old after I had three cases of pneumonia with about a week in-between each one. By the third one I got really swollen and I was losing protein through my urine. Ever since then I've had to take steroids. I've tried multiple drugs and I have met a lot of doctors over the years. I have only met 2 other people with my same disease and it was during one of my hospitalizations. It never occurred to me to talk about it online and try to meet people with my same condition.  

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  • Posted

    Hello Nick, I was diagnosed 3 years ago completely out of the blue, when my feet began to swell, at first I ignored it as it was hot at work but within a couple of days pitting odeama was up to my knees and I couldn't breathe properly. Went to out of hours clinic, and within an hour was sat in a hospital kidney unit with the diagnosis of nephrotic syndrome,It was a quick as that.

    3 years later I have had prednisone which didn't work, I am now on tacrolimus which isn't working well either, I had a partial remission about 2 years ago but since then I have got worse.  My GFR was 41 last time which is about stage 3b kidney disease. I have been told I am not a candidate for cyclophosphamide as I didn't get on well with the steroids. I have been told after another recent biopsy that I have FSGS and will eventually progress to failure and transplant. I am determined to prove the doctors wrong and with careful management and positive thinking aswell as hearing other people's experiences it makes you realise you are not the only one! 

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    • Posted

      Hey, I am also taking tacrolimus along with the prednisone and candesartan. I have never heard about GFR but from what I read, I agree that you can prove them wrong. I have had about three biopsies and surprisingly none have reported signs of kidney failure which my doctors say is not common considering the long-term use of steroids. Although there is no kidney failure, the prednisone has caused chemical imbalances in my body that led to a heart thrombosis, brain ischemia, and a clot in one of my lungs all at the same time which gave me seizures.

      Now I must take levetiracetam for the seizures as well as inject myself everyday with Lovenox (a blood thinner). Positive thinking is a must with this disease. It’s difficult, but I’m glad to see people looking forward to a healthier life.  

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  • Posted

    Hi Nick,

    my son is now 16. He was diagnosed just over a year ago and like you is now on alternate daily steroids. I was interested to hear that your diagnosis came after bouts of pneumonia. My son had pneumonia as a baby & then suffered constant chest infections & asthma. The medical experts all seem to indicate that he will 'grow out of it' but I am doubtful. He does lead a normal life apart from when he gets a cold etc & then he has to monitor his protein levels in case of a relapse. The steroids caused him to lose weight so he is very thin. A worry for his long term health. You are definitely not alone with this condition. 

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    • Posted


      When I was diagnosed my parents were told the same thing. That I would grow out of it and that just as it came randomly it could also go, usually after puberty, and now there’s the possibility that it stays for life.  The stories I’ve seen are mostly about people that got diagnosed recently or in their teens. Since I was diagnosed at such a young age I learned to deal with it, but I feel like those who get diagnosed later in their lives, must have a harder time delaing with this disease  becaause it's a big change to their life. I am glad that your son is living a normal life.

       Personally, I feel like my life has also been somewhat normal. Contrary to your son’s weight loss, the prednisone has made me gain weight. It makes me very hungry and I also have the cushing side effect and it gets worse when the dose is high. The weight gain has put me close to becoming diabetic but as the dose of prednisone lowers so does my appetite and the cushing. The prednisone has also slowed down my growth, I get joint cramps and my vision gets blurry. The relapses have made it a little more challenging in my education because I missed a lot of school days. at one point I missed more than half the school year because I was in and out of the hospital so I had to finish with a virtual school program.  

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