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Nephrotic Syndrome

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  • Elah 1

    My daughter was diagnosed with NS a week ago

    hi all, I am desperate to get some help please. my 3 years old daughter has been diagnosed with nephrotic syndrom a week ago. She is on 50 mg of steroids and penicillin.  She he's been taking her medal for a week now but protein levels are still 5.0 every morning and her swelling is still very visible...

    6 replies 0 votes Last reply
  • laura123456789 2

    I need help! 15yrs daughter just diagnosed

    Can anyone give me and help or advice! My 15yr old daughter was diagnosed last only last week. I took her to a&e because her legs were really swollen (never happened before). she was admitted and told she must go on steroids 60mg for 4 month minimum. They are doing a kidney biopsy next week suspecting...

    6 replies 0 votes Last reply
  • janet24764 1

    Newly diagnosed

    Hi I am a newly diagnosed adult with nephroti syndrome. Still to have biopsy. Just wondering how long from biopsy and starting treaent does it take oedema to go?

    2 replies 0 votes Last reply
  • n93394 2

    Nephrotic Syndrome and Cyclophosphamide

    My son was diagnosed with Nephrotic Syndrome in June 2016 at the age of 4 and half yrs. He responds to Prednisone but has had frequent relapses since then every time we try to taper his dose of Prednisone. His diagnosis is Steroid Dependent Nephrotic Syndrome (Minimal Change Disease). Our doctor started...

    3 replies 0 votes Last reply
  • zee67110 1

    Chemo or Homeopathic treatment?

    My daughter was diagnosed a few weeks after her 3rd birthday in 2015 with nephrotic syndrome caused by minimal change diseas. We did a kidney biopsy roughly a year later after 2 or 3 relapses. About 3 months later she had another relapse. She has been off her medication for 3 weeks now and she had a...

    5 replies 0 votes Last reply
  • n93394 2

    Nephrotic Syndrome Relapse in Child.. What should i do ?

    Hello,  My nephew was diagnosed with Nephrotic Syndrome 4 months ago at the age of 5 and half years. Doctors started him on 12 ml Prednisone daily and his urine protein levels came down to 0 within 7 -10 days. Thereafter, his dosage was gradually tapered and at the end of 4 months, he was on 3ml prednisone...

    3 replies 0 votes Last reply
  • amy31719 2

    Working with nephrotic syndrome

    Hi everyone, I have been diagnosed with nephrotic syndrome last week (29 years old) and I'm due to return back to work in 2 weeks following maternity leave. I'm not up to going back any day soon now, iv just started prednisolone, I get tired very easily and quite grumpy. I was hoping to take a few...

    11 replies 1 vote Last reply
  • Nonita 2

    Nephrotic syndrome

    I've come off steroids and am having all over pain and painful joints.Has anyone else felt this way and what did you do about it

    7 replies 0 votes Last reply
  • colette2866 1


    Hi. First time on here but looking for some advice. My father has had Nephortic Syndrome for many years and it has been well contolled for several.  However 4 days he had to have emergency heart stents fitted and it would seem that the dye used during the proceedure has damaged his kidneys!.  Having...

    2 replies 0 votes Last reply
  • katie79250 1

    Nephrotic syndrome - showing protein one day but none the next

    Hey! My son was diagnosed with ns at the age of 3 and had a few relapses early on but these were eventually controlled with immunosuppressant. He is now 15 and up until August he had no releases for 4 year but now he has released 4 times in the past four mounths. Each time he has relapsed it had been...

    0 replies 0 votes Posted
  • chicku10973 1

    Minimal change disease

    I have minimal chance disease ,relapse occured after stoping one steriod course for 4 month ,is it has a perment recovery ?

    1 reply 0 votes Last reply
  • Vanessalee 1

    7 yr old with puffy eyelids, normal urine?

    My 7 yr old daughter has had swollen eyelids every morning for about 6 monthes now. At first I was the only one who could notice but now it's become noticable to everyone else. I started googling and realized she has had a couple other symptoms in the past, (milky urine when she was 3.5 yrs old that...

    0 replies 0 votes Posted
  • valerie94214 2

    What hope is there that Nephrotic Syndrome will be cured?

    In an earlier message I mentioned my grandson of 18 having NS since he was a baby. We were told then that there was a good chance he would grow out of it. He never has and his last relapse was bad needing high Prednisalone dosage. Is there any good news out there that we can hang on to? Is ther any...

    8 replies 0 votes Last reply
  • ran62985 1

    Idiopathic nepronic syndrome

    Hi,my daughter 2.6 years old have been diagnosed with mcd (Ns) in Dec 2016.after 7 days of pedisinole she was in to remission. But today again. She relapsed in to 3+.after one month. can any one pls advice what could have been caused relapse even in dose with pedisinole. Is there any thing to know about.iam...

    0 replies 0 votes Posted
  • crystal48246 2

    My son got diagnosed with Nephrotic syndrome

    Could anyone help me! My 8 year old got diagnosed with Nephrotic syndrome is on 15 ml of steroids twice a day for 7 weeks now and no change! I am so scared for him. I hate that he swells and doesn't look the same. My poor baby, I am so afraid that he will get bullied in school. Please let me know what...

    3 replies 0 votes Last reply
  • taryn33648 1

    Fusty find out

    Hi I just found out about 2 weeks ago I have N.S. I don't know to much about it. I am not on any medication as yet they are waiting for more results. Can you please tell me more or give me any advic e. Thank you

    4 replies 0 votes Last reply
  • Guest M

    nephrotic syndrome and cyclosporin

    Hi i have posted on here before about my history of Nephrotic Syndrome, After a course of Prednisolone in Jan 2008 i am now relapsing AGAIN.... The dr's have decided to try Cyclosporin Treatment over 2 years and i am very scared about the side effects. I have had years of depression, weight gain, moon...

    8 replies 0 votes Last reply
  • jade49756 1

    My daughter has hadnephrotic syndrome for 3 years andkeeps relapsing

    My daughter got diagnosed with nephrotic syndrome 3years ago in March, she I now 10 years old. She has relapsed more than 5 times now and had been on prednisone for 2years without a break and still comes back, she also takes mycrophenolate (mmf) the dosage of this was increased to try get off the steroids...

    7 replies 0 votes Last reply
  • notcrystle 1
  • sianfeff 2
  • n93394 2

    Nephrotic Syndrome Relapse Treatment.. seeking help

    My nephew was diagnosed with Nephrotic Syndrome 4 months ago at the age of 5 and half years. Doctors started him on 12 ml Prednisone daily and his urine protein levels came down to 0 within 7 -10 days. Thereafter, his dosage was gradually tapered and at the end of 4 months, he was on 3ml prednisone on...

    1 reply 0 votes Last reply
  • garethburns4 1

    Nephrotic syndrome membranous nephrothy

    Hi everyone, I was diagnosed with this condition over a year and a half ago. Now at the age of 26 I am only starting to see the results of the retuximab working on my body after 4 months previous treatment. After trying many other alternatives such as cyclosporine, predisnone (steroid) and continually...

    1 reply 0 votes Last reply
  • bharathi53641 1

    Anyone help?

    Hi I was diagnosed with all different type of kidney issues from the age of 18 yrs. Then they said i had minimal change and the final diagnosis was Neuphrotic syndrome. while they were still trying to diagnose and testing different steroids on me my left hip gave up at the age of 21( due to my bones...

    3 replies 0 votes Last reply
  • rhona85440 2

    Ciclosporine for Nephrotic Syndrome

    My son is 4 and was diagnosed at the start of the year. He has never been able to get off Prednisolone due to relapses. We tried Cyclophosphamide which didn't work and we are now about to try Ciclosporine. It will be a 0.6 ml dose twice a day. If anyone has any experience of this drug I would really...

    3 replies 1 vote Last reply
  • oldqueenbalham 2

    Turned down for rituximab for Nephotic Syndrome

    Hi Guys I have Nephrotic Syndrome and membranous nephropathy for two to three years.  My star Specialist has tried a number of immunosuppresant drugs including 6 months worth of chemo without success.  He applied to NHS England for funding for a course of rituximab which has been turned down leaving...

    6 replies 0 votes Last reply
  • Becky-mum-of-Lauren 1

    childhood nephrotic syndrome

    Hi, I have a 7 year old with this syndrome and wondered if anyone has a child of similar age that they would be interested in talking to my daughter?? I feel that not many people have heard of this syndrome and although it is upsetting for us parents, it is just as much if not more for the children as...

    33 replies 1 vote Last reply
  • hayley32057 1

    child ?nephrotic syndrome

    We are waiting to see specialist but for 7 months my child who is 6 has has proteinuria. And gorss hematuria and was told she had glomerulnephritis. Recent bloods showed high b12 then repeat two weeks later showed very low b12 and anaemia. Her rceent urine test had 51 mg/l or albumin . I dont know what...

    1 reply 0 votes Last reply
  • johnboy1954 2

    Membranous Glomerulonephritis - just diagnosed

    I am. 60 year old male, newly diagnosed. I have been treated quickly and am currently on a 6 week course of Irbesartan as a starter to see if they have any effect. I work full time. I have been told the disease is in the medium category of mild, medium, severe. My question is about fatigue. What symptoms...

    21 replies 0 votes Last reply
  • satyavathi2104 2

    6 yrs nephrotic syndrome future consequences

    my child aged 6 yrs 10 months diognised with NS recently and he is on 40 mg predsilone daily. Is there any parent or any one who can help me out find out the ways to avoid replapse second time in his life. What all measures we can take in case of my child. Also what are the consequences in terms of mental...

    6 replies 0 votes Last reply
  • jhon111111 1

    Nephrotic Syndrome

    I've Nephrotic Syndrome since 2001 without any Symptoms just higher pressure and at 2007 I've fsgs and mpgn and every eleven piece of kidney found focal five piece. now I'm trying to save my kideny for long time possible after that what I'll can do please tell me. after transport a new kideny Nephrotic...

    2 replies 0 votes Last reply
  • dewclaw 1

    Calcium supplement

    For healthy adult, calcium supplement dose that is being recommended is 1200mg per day to prevent osteoporosis. What about patients with chronic kidney disease? I heard that >500mg can increase the risk of Vascular calcification, etc. What would be the recommended dose of Ca to prevent osteoporosis in...

    1 reply 1 vote Last reply
  • JVG 1
  • rashawn 92540 1


    I have gained about 30 pounds in edema due to my nyprotic syndrome in less than 24/7 hrs what should I do?

    5 replies 0 votes Last reply
  • nimrod47134 2

    nephrotic syndrome mcd

    Does anyone here have nephrotic syndrome mcd and he is after 21 years old? and would like to talk about it? about things like what kind of medicines? treatments? about life with the disease? everything about that..

    5 replies 1 vote Last reply
  • kristen4 1

    Childhood nephrotic sydrome and adult lupus

    I will be 46 in a few days and have not had a relapse of Nephrotic syndrome since I was in my teens . I have had a variety of other urinary problems and other health issues since.  I devolped a rash on my back that has recurred for many years , muscle pain since my early 20's , joint pain for the last...

    0 replies 1 vote Posted
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