Renal Services& UrologyDirectorate

NephroticSyndrome

3/05/JP

a patients guide

University Hospitals of LeicesterNHS Trust

Leicester General Hospital

If you suffer from nephrotic syndrome, your kidneys let theprotein leak out in your urine. When this happens, thewater in your blood escapes from blood vessels andcapillaries into the tissues of your body, which causesswelling (oedema). Your kidneys may become inflamed.Any swelling will be made worse if your kidneys try to holdmore salt than they should to make up for losing theprotein.

What is Nephrotic Syndrome?

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Nephrotic syndrome is a rare disease that affectsthe kidneys. Most people have two kidneys, oneon either side of the body just beneath theribcage. Healthy kidneys filter the blood. Theyallow small particles of waste products and waterto go through, which are passed as urine. Thekidneys hold on to larger particles such asprotein. Holding protein inside your body, insteadof letting it pass through, is important for goodhealth. The most common protein is calledalbumin and it should stay in your bloodstream.Albumin holds water in the bloodstream as itcirculates around your body.

Questions regularly asked by Patients

What causes Nephrotic Syndrome?

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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 are the symptoms?

Nephrotic syndrome can happen to anyone at any agealthough the condition, in many cases, appears in childhood.Exactly what causes it is often unknown. In children, it issometimes linked to an infection or a drug treatment thatcaused damage to the kidneys. A family history of nephroticsyndrome may slightly increase your risk. However, it can bemore common in families with a history of allergies.In adults, there are some risk factors that may slightly increaseyour 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 PregnancyYour doctor will take your full medical history and carry outa full examination. This will help them find out if you have hadany illnesses or allergies to drug treatments recently whichmay have contributed to your current problems.

What causes Nephrotic Syndrome?

A kidney biopsy may be carried out on adults who have justbeen diagnosed to try to find the cause of their nephroticsyndrome. In children,a biopsy is useful in rare cases if medicinedoes not work. A kidney biopsy is a simple test. A small sampleof the kidney is taken and examined under a microscope. Thedoctor can then decide how best to treat the disease.Treatment is given to relieve the symptoms of nephroticsyndrome. If the cause of the disease is known, you will betreated to stop further damage to your kidneys. Symptomscan usually be controlled within 2 weeks, but you shouldcarry on with your treatment for as long as your doctorthinks you need to. In most cases, your doctor will prescribea 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.

Tests and Treatments

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A simple urine test will check for protein in yoururine. A more detailed test, which involves collectingyour urine over a period of 24 hours, tells yourdoctor how much your kidneys are affected. Yourdoctor will also do some blood tests which will assesshow your kidneys are working. A scan or a biopsy ofyour kidney may be necessary but your doctor willdecide if this is appropriate.

Questions regularly asked by Patients

Steroids

Common Side Ef fects of Steroids

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Steroids are produced by the body and help control the way itworks. Manufactured steroids are used to treat many diseasesand conditions. If you use them in the way your doctor has toldyou to, they can be very effective. Manufactured steroids areoften prescribed to children when they are first diagnosed withnephrotic syndrome. This reduces inflammation in the kidneysand helps children to keep more protein (albumin) in theirbodies. After between l and 2 weeks of steroid treatment, theirurine tests should show less or no protein. This is a sign thatthe treatment is working. People taking steroids should carrytheir medication alert card at all times. You should not stophaving steroid treatment without first talking to your doctor.

You (or your child, if they have the disease) could experiencesome 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 doctorThese side effects are all short-term and should disappearafter your treatment has finished. Your doctor will balancethe 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 workingwhen there is no protein in your urine, any swellingdisappears and you are generally in good health.

Relapses are common in early childhood but decrease withage. Most children receiving treatment now will have nosymptoms and be off treatment in 3 years. More than 90%of children with nephrotic syndrome will go into adulthoodwith their kidneys functioning normally.

Although nephrotic syndrome can be uncomfortable to livewith and at times inconvenient, it can be managed. Byfollowing your doctors advice and taking your medicine asyou are told, you can overcome the condition.

Questions regularly asked by Patients

What happens after the Treatment?

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Although treatment can usually prevent nephroticsyndrome getting worse, the condition may notalways be cured. To prevent it from happeningagain, people with nephrotic syndrome shouldtake good care of themselves, follow theirdoctors instructions and take medicines asadvised. By doing this, most people withnephrotic syndrome can look forward to anormal life.

Relapses

What can you do about it?

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If you suffer from nephrotic syndrome, there is a lot you cando right now to make yourself feel better. Listed here are afew 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 withnephrotic syndrome and other kidney diseases. Specialguidance and support for parents who have children withnephrotic syndrome is also available. Whatever yourcircumstances, feel free to get in touch with the people whocan help (see over).

If you have any comment or questions, pleasespeak to us at the clinic, whilst attending fordialysis or ask your nurse. You may find it helpfulto note any comment or questions below:

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Written by Clinical Governance and

RENALSHARED

GOVERNANCECOUNCIL

Leicester KidneyPatient Association (LKPA)Phone: Renal Secretary

0116 258 4204British KidneyPatient AssociationBordonHantsGU35 9JZPhone: 01420 472021or: 01420 472022 Fax: 01420 475831Renal/Urology BleepholderPhone: 0116 249 0490(via switchboard)and ask the operator for theRenal BleepholderFurther information can beobtained from:The National KidneyFederation6 Stanley StreetWorksopNotts, S81 7HXPhone: 01909 487795Fax: 01909 481723e-mail: nfk@kidney.org.ukHelpline: 0845 601 0209www.kidney.org.uk

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