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KIDNEY LIBRARY

Nephrotic syndrome

A clear guide to protein loss, swelling, diagnosis, treatment and urgent warning signs.

PATIENT & FAMILY GUIDE

Understand the condition in a few minutes.

Nephrotic syndrome develops when the kidney’s microscopic filters allow a large amount of protein to escape into urine. Blood albumin can fall, fluid may collect in tissues and swelling may appear.

Medical illustration showing the kidneys inside the body.
The problem begins in the glomeruli: the microscopic filtering units inside each kidney.
  • 01

    Protein in urine

    The diagnosis needs a urine measurement; foam alone is not enough.

  • 02

    Low blood albumin

    Protein loss can lower albumin and contribute to swelling.

  • 03

    Not one disease

    The cause and treatment differ by age and kidney condition.

  • 04

    Treatment is possible in many cases

    Outcome depends on the cause and response to treatment.

01

What it is

Healthy glomeruli keep useful proteins in the bloodstream while removing waste and excess water. When this filtration barrier is injured, too much protein—especially albumin—passes into urine.

  • 01Albumin fallsBlood holds fluid less effectively.
  • 02Swelling appearsSalt and water retention can add to oedema.
  • 03Protein leaksUrine protein rises substantially.
  • 04Filter injuryThe glomerular barrier becomes too permeable.
In simple terms:

the kidney filter becomes leakier than normal, allowing protein that should remain in blood to pass into urine.

02

Common symptoms and signs

One symptom does not establish the diagnosis. New swelling together with urine protein needs medical assessment.

  • Eyes

    Swelling around the eyes, often more noticeable after waking.

  • Legs

    Swelling of the feet or legs; pressing may leave a temporary indentation.

  • Urine

    Persistent frothy urine may reflect protein, but it must be tested.

  • Weight

    A rapid increase can result from retained fluid rather than body fat.

  • Urine volume

    Urine may decrease during severe swelling or a relapse.

  • Energy

    Fatigue or reduced appetite may occur but are not specific to this condition.

Does all frothy urine mean kidney disease?

No. A fast urine stream, concentrated urine or cleaning products can cause foam. Persistent foam or foam with swelling should prompt urine testing rather than visual judgement alone.

03

Causes differ by age

ADULTS

Primary or secondary kidney disease

  • Membranous nephropathy, focal segmental glomerulosclerosis (FSGS) or minimal change disease.
  • Diabetes, lupus, amyloidosis and selected blood disorders.
  • Selected infections, medicines, malignancies or inherited disorders.
CHILDREN

Often steroid-sensitive, but not always

  • Minimal change disease is the most common pattern.
  • Genetic causes are considered with very early onset, family history, syndromic features or steroid resistance.
  • FSGS and immune or inflammatory diseases are other possibilities.
  • Nephrotic syndrome beginning before 1 year of age needs prompt pediatric-nephrology assessment because congenital or genetic causes are more likely.
04

How is the diagnosis confirmed?

  1. 01

    Measure urine protein

    Urine protein loss is usually confirmed with a urine protein-to-creatinine ratio (uPCR); a first-morning sample is preferred in children. A timed 24-hour collection or other tests may be used in selected cases.

  2. 02

    Check blood tests

    Albumin, creatinine and estimated kidney function, electrolytes, blood count and lipids are commonly considered.

  3. 03

    Look for the cause

    History, examination and selected tests for diabetes, immune disease, infection or other causes are guided by the individual presentation.

  4. 04

    Use imaging, biopsy or genetics when indicated

    Ultrasound may be requested. A biopsy or genetic test is used when it is likely to change diagnosis, treatment or prognosis; neither is required for everyone.

Special points in children:

Most children aged 1 to under 12 years with a typical presentation do not need a biopsy at the start. Biopsy and/or genetic testing are discussed when disease starts at age 12 or older, or with visible blood in urine, low complement, kidney dysfunction not explained by low circulating volume, persistent high blood pressure, rash or arthritis, syndromic features or family history. Genetic testing is strongly recommended in steroid-resistant nephrotic syndrome.

05

Treatment and follow-up

The goals are to treat the cause, reduce protein loss and swelling, protect kidney function and prevent complications while limiting treatment harm.

  • 01

    Treat the cause

    Treatment may address a specific glomerular disease, diabetes, lupus, infection or another identified cause.

  • 02

    Control swelling

    Reducing dietary sodium and carefully prescribed diuretics may help. The dose depends on blood pressure, kidney function and fluid status.

  • 03

    Protect the kidneys

    Selected patients may receive angiotensin-converting enzyme inhibitors (ACEi) or angiotensin receptor blockers (ARB) to lower blood pressure and protein loss, with monitoring of creatinine and potassium.

  • 04

    Use immune treatment selectively

    Steroids or other immune medicines are chosen according to age, diagnosis, response, biopsy findings and sometimes genetics.

  • 05

    Prevent complications

    The care team assesses infection, blood-clot, lipid and vaccination risks. Preventive anticoagulation is not automatic for everyone.

  • 06

    Monitor response

    Urine protein, weight, swelling, blood pressure and kidney function are followed on an individualized schedule.

Do not self-treat.

Too much diuretic can cause low circulating volume or acute kidney injury. Steroids and other immune medicines can cause serious infection and other complications without the correct diagnosis and monitoring.

06

Safe daily steps

  • Track weight and swelling

    Record them at a consistent time if your care team recommends this.

  • Monitor blood pressure and urine as advised

    If prescribed, test the first-morning urine and record results. Do not start a steroid dose because of a dipstick result unless this is part of a written plan from the treating team.

  • Reduce sodium

    Choose fresh home-prepared food more often and limit pickles, processed meats, stock cubes and salty sauces.

  • Use a balanced protein intake

    Do not start a high-protein diet to replace urine losses. Ask for individualized nutrition advice.

  • Take medicines exactly as prescribed

    Do not stop steroids abruptly or adjust diuretics from swelling alone.

  • Check medicines and vaccines

    Avoid NSAIDs such as ibuprofen or diclofenac unless approved. Ask about pneumococcal, influenza and varicella vaccines. Live vaccines are not given during immunosuppressive doses; the treating team sets safe timing.

Fluids are individualized:

not every person needs fluid restriction. Advice depends on swelling, sodium, urine output and heart and kidney status.

DO NOT WAIT

When should I seek urgent medical help?

Nephrotic syndrome can increase the risk of blood clots, infection or worsening kidney function. Seek urgent assessment for any of the following:

  • 01

    Sudden breathlessness or chest pain

    This may indicate lung fluid or a blood clot and needs emergency assessment.

  • 02

    Painful swelling in one leg

    Especially when sudden or associated with redness.

  • 03

    Severe or persistent abdominal pain, with or without fever

    This can signal a serious infection or another complication, particularly during immune-suppressing treatment.

  • 04

    Fever, chills or sudden deterioration

    This needs same-day medical assessment, especially in children or anyone taking a steroid or immune-suppressing medicine.

  • 05

    Marked reduction in urine

    Seek urgent advice if urine falls substantially or stops.

  • 06

    Rapidly worsening swelling

    Especially with rapid weight gain or difficulty breathing or lying flat.

  • 07

    Fainting, confusion or persistent vomiting

    These may signal dehydration, infection or another serious complication.

  • 08

    Sudden severe headache, seizure, weakness or speech change

    One-sided weakness or a disturbance of speech or consciousness can signal a clot in the brain and needs emergency assessment.

  • 09

    Chickenpox or measles exposure during immune treatment

    A child taking immune-suppressing medicine who is not known to be immune needs same-day advice from the treating team.

For life-threatening symptoms, go to the nearest emergency department or contact your local emergency service immediately.

Frequently asked questions