University Hospitals of Leicester

NHS Trust

Leicester General Hospital

a patients guide

Renal Services
& Urology
Directorate

Nephrotic
Syndrome
3/05/JP

Questions regularly asked by Patients

W h a t i s N e p h ro t i c S y n d ro m e ?

Nephrotic syndrome is a rare disease that affects

the kidneys. Most people have two kidneys, one
on either side of the body just beneath the
ribcage. Healthy kidneys filter the blood. They
allow small particles of waste products and water
to go through, which are passed as urine. The
kidneys hold on to larger particles such as
protein. Holding protein inside your body, instead
of letting it pass through, is important for good
health. The most common protein is called
albumin and it should stay in your bloodstream.
Albumin holds water in the bloodstream as it
circulates around your body.
What causes Nephrotic Syndrome?

If you suffer from nephrotic syndrome, your kidneys let the

protein leak out in your urine. When this happens, the
water in your blood escapes from blood vessels and
capillaries into the tissues of your body, which causes
swelling (oedema). Your kidneys may become inflamed.
Any swelling will be made worse if your kidneys try to hold
more salt than they should to make up for losing the
protein.

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What are the symptoms?

Frothy urine
Loss of appetite
Weakness and tiredness
Being more thirsty than
normal
Passing less urine than
usual
Being out of breath when
you are active or resting

Suffering from a number

of infections
Build up of fluid in the
tissues instead of in the
blood which causes swelling.
This is called oedema.
It usually starts as puffiness
around the eyes and ankles,
then puffiness of the skin,
followed by swelling of the
abdomen.

What causes Nephrotic Syndrome?

Nephrotic syndrome can happen to anyone at any age

although the condition, in many cases, appears in childhood.
Exactly what causes it is often unknown. In children, it is
sometimes linked to an infection or a drug treatment that
caused damage to the kidneys. A family history of nephrotic
syndrome may slightly increase your risk. However, it can be
more common in families with a history of allergies.
In adults, there are some risk factors that may slightly increase
your chances of getting nephrotic syndrome. These are as follows.
Certain medicines, such as those which treat arthritis
Contact with chemical toxins
Illness such as lymphoma (cancer of the lymph glands),
diabetes or some viral infections
Having an immune system which has been affected by
certain illnesses or drug treatments
Drug addiction
Pregnancy
Your doctor will take your full medical history and carry out
a full examination. This will help them find out if you have had
any illnesses or allergies to drug treatments recently which
may have contributed to your current problems.
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Questions regularly asked by Patients

Te s t s a n d Tre a t m e n t s

A simple urine test will check for protein in your

urine. A more detailed test, which involves collecting
your urine over a period of 24 hours, tells your
doctor how much your kidneys are affected. Your
doctor will also do some blood tests which will assess
how your kidneys are working. A scan or a biopsy of
your kidney may be necessary but your doctor will
decide if this is appropriate.
A kidney biopsy may be carried out on adults who have just
been diagnosed to try to find the cause of their nephrotic
syndrome. In children,a biopsy is useful in rare cases if medicine
does not work. A kidney biopsy is a simple test. A small sample
of the kidney is taken and examined under a microscope. The
doctor can then decide how best to treat the disease.
Treatment is given to relieve the symptoms of nephrotic
syndrome. If the cause of the disease is known, you will be
treated to stop further damage to your kidneys. Symptoms
can usually be controlled within 2 weeks, but you should
carry on with your treatment for as long as your doctor
thinks you need to. In most cases, your doctor will prescribe
a combination of medicines. These can include the following: Diuretics (water tablets), such as bumetanide and
frusemide, to help your body pass excess water and
reduce swelling.
ACE Inhibitors, such as lisinopril, ramipril etc;
(or angiotensin receptor antagonists), such as losartan,
valsartan etc; to help reduce the protein in the urine,
and if necessary, lower blood pressure.
Anti-inflammatory medicines, such as corticosteroids,
to help reduce inflammation in your kidneys.
Immunosuppressants, such as cyclosporin or
cyclophosphamide.
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S t e ro i d s

Steroids are produced by the body and help control the way it
works. Manufactured steroids are used to treat many diseases
and conditions. If you use them in the way your doctor has told
you to, they can be very effective. Manufactured steroids are
often prescribed to children when they are first diagnosed with
nephrotic syndrome. This reduces inflammation in the kidneys
and helps children to keep more protein (albumin) in their
bodies. After between l and 2 weeks of steroid treatment, their
urine tests should show less or no protein. This is a sign that
the treatment is working. People taking steroids should carry
their medication alert card at all times. You should not stop
having steroid treatment without first talking to your doctor.
C o m m o n S i d e E f f e c t s o f S t e ro i d s

You (or your child, if they have the disease) could experience
some side effects.
Natural resistance to colds and coughs may be reduced
Appetite may increase and you may gain weight
Facial flushing may appear or stretch marks may
appear on your skin
A tendency to develop diabetes may be found
Blood pressure may go up
Mood swings or temper tantrums
Sickness or diarrhoea; if this happens, call your doctor
These side effects are all short-term and should disappear
after your treatment has finished. Your doctor will balance
the benefits of your treatment against the risk of side effects,
or your illness. In most cases, the combination of medicines,
a healthy diet and rest will work. Your treatment is working
when there is no protein in your urine, any swelling
disappears and you are generally in good health.
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Questions regularly asked by Patients

W h a t h a p p e n s a f t e r t h e Tre a t m e n t ?

Although treatment can usually prevent nephrotic

syndrome getting worse, the condition may not
always be cured. To prevent it from happening
again, people with nephrotic syndrome should
take good care of themselves, follow their
doctors instructions and take medicines as
advised. By doing this, most people with
nephrotic syndrome can look forward to a
normal life.

Relapses

Relapses are common in early childhood but decrease with

age. Most children receiving treatment now will have no
symptoms and be off treatment in 3 years. More than 90%
of children with nephrotic syndrome will go into adulthood
with their kidneys functioning normally.
Although nephrotic syndrome can be uncomfortable to live
with and at times inconvenient, it can be managed. By
following your doctors advice and taking your medicine as
you are told, you can overcome the condition.

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What can you do about it?

If you suffer from nephrotic syndrome, there is a lot you can

do right now to make yourself feel better. Listed here are a
few helpful suggestions.

Ask for advice on a low-salt, low-fat diet

from your dietician

Watch how much fluid you drink and stay within any
limit set by your doctor

Follow your doctors advice and take your medicines

as he/she tells you

Keep appointments at the clinic

If you suffer from oedema, take complete rest until
the swelling goes down. When it reduces, you can
gradually start activity again.
Support and Information

There are many associations that offer help to people with

nephrotic syndrome and other kidney diseases. Special
guidance and support for parents who have children with
nephrotic syndrome is also available. Whatever your
circumstances, feel free to get in touch with the people who
can help (see over).

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Contact Numbers

Comments or Questions

(Price3/05)23050KR

If you have any comment or questions, please

speak to us at the clinic, whilst attending for
dialysis or ask your nurse. You may find it helpful
to note any comment or questions below:

Leicester Kidney
Patient Association (LKPA)
Phone: Renal Secretary
0116 258 4204
British Kidney
Patient Association
Bordon
Hants
GU35 9JZ
Phone: 01420 472021
or:
01420 472022
Fax:
01420 475831
Renal/Urology Bleepholder
Phone: 0116 249 0490
(via switchboard)
and ask the operator for the
Renal Bleepholder
Further information can be
obtained from:
The National Kidney
Federation
6 Stanley Street
Worksop
Notts, S81 7HX
Phone: 01909 487795
Fax:
01909 481723
e-mail: nfk@kidney.org.uk
Helpline: 0845 601 0209
www.kidney.org.uk

Written by Clinical Governance and

RENAL
SHARED
GOVERNANCE
COUNCIL