Treatment for FSGS aims to:
- reduce protein loss in the urine
- control swelling
- protect kidney function
- prevent complications
The FSGS pattern of scarring that is seen on a kidney biopsy is permanent. However, the underlying process that causes the scarring can be treated.
Successful treatment means achieving remission - when the protein leakage stops (complete remission) or significantly reduces (partial remission). Some children may continue to have protein leakage despite treatment.
Steroids
The first treatment for nephrotic syndrome is steroid medication, usually prednisolone. Steroids are chemicals that suppress the immune system or make it less active. Your child’s doctor will give you more information about how and when your child should take the medicine.
It is important that you continue giving the steroid to your child as your doctor has told you, even if your child is getting better. Stopping steroids suddenly can make your child very unwell, so your child should only stop taking steroid medicines on the advice of your doctor.
Immunosuppressants
If your child’s nephrotic syndrome is caused by FSGS, they may also need stronger medicines called immunosuppressants. There are different types of immunosuppressants, and your child may need to try more than one, sometimes in combination, to treat their condition. They include:
- tacrolimus
- mycophenolate mofetil – also called MMF
While your child is on steroids or immunosuppressants, you will need to test your child’s urine for protein every morning. Your child’s doctor will explain how to do this.
Vaccinations
Children taking these steroids or immunosuppressants are more likely to get infections. It is therefore important that your child has the flu vaccine injection (rather than the nasal spray) each year.
However, some other vaccines are not safe for your child to have while they are taking steroids or immunosuppressants. Your doctor will give you more information about these.
Other medication
Some children will be prescribed further medications such as:
- Antibiotics (usually penicillin) to prevent or treat infection
- Diuretics to reduce the water retention that causes swelling
- Angiotensin-converting enzyme (ACE) inhibitors to reduce the amount of protein lost in the urine
Your child’s kidney team will monitor how well their treatment is working by:
- regular urine tests to measure protein levels
- blood tests to check kidney function
- blood pressure measurements
- monitoring for any new symptoms or side effects
Contact your child’s doctor if they have any of the following symptoms while on steroid medicines:
- fever (temperature above 38°C), with a sore throat or a cough
- a rash or severe bruising
- bad stomach pain or repeated vomiting – sometimes steroids can cause ulcers in the stomach.
Dietary changes
Your child may need to make temporary changes to what they eat. For example, they may need to eat less salt while they have swelling or puffiness or are taking steroids. This is because higher levels of salt in the body cause the kidneys to retain more water.
Your child’s healthcare team will give you more information on this if it applies to your child.