The first treatment for nephrotic syndrome is steroids (prednisolone). These work for eight out of ten children with nephrotic syndrome and are very effective at reducing the protein loss and reducing the swelling. Your child will then be considered to be in remission.

Steroid-sensitive nephrotic syndrome treatment

One in five children with steroid-sensitive nephrotic syndrome (SSNS) only need one round of treatment (usually lasting four-six weeks) and the condition never comes back. However four in five children will need repeated rounds of treatment because of relapses.

One in two children will have multiple relapses (when these happen close together this is called frequently relapsing nephrotic syndrome). These relapses are often triggered by an infection or a cold and will need repeated treatment. Relapses get less frequent as your child grows up and usually stop when they reach adulthood.

Steroids can cause side effects including increased appetite, weight gain (especially in the face) and changes in mood. While your child is in relapse and taking steroid medication, they will also take medication to protect them from getting stomach ulcers. They may also be given an antibiotic as this will reduce the risk of infections.

Your child may be prescribed other medications to reduce the need for steroids. These include mycophenolate and rituximab. Your doctor will explain more if these are needed.

You will be asked to check your child’s urine at home for signs of protein to monitor for any relapses.

Severe kidney damage and the need for dialysis or transplant is very rare in SSNS and most children are treated by a general paediatrician (children’s doctor).

Steroid-resistant nephrotic syndrome treatment

Children with steroid-resistant nephrotic syndrome (SRNS) may need more specialist care and might be seen by members of a kidney paediatric healthcare team.

If steroid treatment does not work, your child may be prescribed other medications to suppress their immune system. One of these medications is called tacrolimus. Your doctor will explain more if these are needed.

Other medications are angiotensin‐converting enzyme (ACE) inhibitors or angiotensin receptor blockers (ARBs) to help reduce proteinuria.

Medication to help your child pass more urine may also be prescribed to reduce the swelling.

Dietary changes may also be recommended, including following a low-salt diet and taking vitamin supplements. This should only be undertaken with advice and monitoring by a specialist kidney dietitian. Babies with SRNS may need to be tube fed to make sure they get enough nutrition to grow and develop.

Some children with SRNS recover or go into remission. However, for most children the condition will get worse over time and will lead eventually to kidney failure and the need for dialysis or a transplant.

SRNS can reoccur in the new kidney. This is less likely if the SRNS is due to a genetic mutation and more likely if your child initially had SSNS and then developed SRNS.

For more information on nephrotic syndrome including its diagnosis, symptoms and treatment, visit Nephrotic Syndrome Trust.

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