Tacrolimus for nephrotic syndrome

Name of medicine

Tacrolimus

Brand names: Adoport, Prograf, Modigraf (granules)

Why is it important for my child to take Tacrolimus?

Nephrotic syndrome affects the kidneys. Proteins from the blood leak into the urine. This is thought to be caused by the immune system. Tacrolimus is an immunosuppressant – it makes the immune system less active. It may be prescribed if your child has had several relapses of nephrotic syndrome.

What is Tacrolimus available as?

• Capsules (Adoport, Prograf): 0.5 mg, 0.75 mg (Adoport),1 mg, 2 mg (Adoport) 5 mg; these may contain small amounts of lactose
• Granules (Modigraf): 0.2 mg and 1 mg sachets

When should I give Tacrolimus

•  Tacrolimus is usually given twice each day. This should be once in the morning and once in the evening. Ideally, these times are 10–12 hours apart, for example some time between 7 and 8 am, and between 7 and 8 pm.
•  Give the medicine at about the same time each day so that this becomes part of your child’s daily routine, which will help you to remember.
•  If your child is having blood taken to measure the level of tacrolimus, make sure their evening dose is 12–14 hours before the time of the blood test.

How much should I give?

Your doctor will work out the amount of Tacrolimus (the dose) that is right for your child. The dose will be shown on the medicine label.

How should I give Tacrolimus?

• Capsules should be swallowed with a glass of water, squash or juice. Your child should not chew the capsule.

Modigraf granules

• Do not use plastic cups or spoons, as the granules will stick to them.
• Cut open the correct number of sachets with scissors, one at a time, and tip the contents into a small glass or cup. Tap the sachet to get the granules out but you do not need to scrape them out.
• Add at least 0.4 mL of water for each 0.2 mg sachet or 2 mL for each 1 mg sachet. You can measure these amounts with an oral syringe.
• Stir the mixture until the powder is dissolved.
• Your child should drink all the mixture straight away or you can give it to them using a spoon or oral syringe.
• Add the same amount of water as used above to the glass or cup and swirl it around. Your child should drink all the mixture straight away. This is to make sure they get the whole dose.
• Do not use more than 50 mL of water for the two steps.

When should the medicine start working?

The medicine starts to work immediately but you will not see any difference in your child. It may take a few weeks to prevent relapse of nephrotic syndrome. It is important to continue giving Tacrolimus as your doctor has told you to.

What if my child is sick (vomits)?

• If your child is sick less than 30 minutes after having a dose of Tacrolimus, give them the same dose again.
• If your child is sick more than 30 minutes after having a dose of Tacrolimus, do not give them another dose. Wait until the next normal dose.

If your child is sick again, seek advice from your family doctor, nurse, pharmacist, or hospital. They will decide what to do based on your child’s condition and the specific medicine involved.

What if I forget to give it?

Tacrolimus should be given twice each day. If you remember up to 6 hours after you should have given a dose, give your child the missed dose. For example, if you usually give a dose at about 7am, you can give the missed dose at any time up to 1pm. If you remember after that time, do not give the missed dose. Just give the next dose as usual.

What if I give too much?

It can be dangerous to give too much Tacrolimus. If you think you may have given your child too much, contact your doctor or local NHS services (details at end of leaflet) for advice. Have the packaging with you if you telephone for advice.

Are there any possible side effects?

We use medicines to make our children better, but sometimes they have other effects that we don’t want (side-effects).

Side effects you must do something about

Other side-effects you need to know about

• Your child may get dizzy, seem confused, anxious or depressed and may have difficult sleeping.

• They may have blurred (fuzzy) vision or hearing problems.

• They may get muscle cramps and pains in the joints.

• They may lose some hair.

Your child may sometimes get side-effects that are not listed above. If you notice anything unusual and are concerned, contact your doctor. You can report any suspected side-effects to the UK safety scheme at mhra.gov.uk/yellowcard.

More information on side-effects can be found in a leaflet on our website.

Can other medicines be given at the same time as Tacrolimus?

• You can give your child medicines that contain paracetamol, unless your doctor has told you not to.

You should not give your child medicines that contain ibuprofen.

Tacrolimus should not be taken with some medicines that you get on prescription. It is important to tell your doctor and pharmacist about any other medicines your child is taking before starting Tacrolimus.

Check with your doctor or pharmacist before giving any other medicines to your child. This includes herbal and complementary medicines.

Is there anything else I need to know about this medicine?

• Your child will be more prone to infection because tacrolimus suppresses the immune system. If your child has a fever (temperature above 38°C) or seems unwell, contact your doctor straight away.
• Your child must always have the same brand of tacrolimus. Keep a note of which brand this is, and check that you are given the right one each time you get a new supply.
• Your child should not eat grapefruit or drink grapefruit juice, as this may increase the level of tacrolimus in the body, which could be harmful.
• Tacrolimus may increase the risk of skin cancer. Your child should avoid strong sunlight. Protect their skin with clothing and high-factor sunscreen (at least SPF 50).
• Tacrolimus is also used to prevent the rejection of transplanted organs. Information in the public domain may relate to this use, rather than nephrotic syndrome.

General advice about medicines

• Only give this medicine to your child. Never give it to anyone else.

• If you think someone else may have taken the medicine by accident, contact your doctor for advice.

• Make sure that you always have enough medicine. Order a new prescription at least 2 weeks before you will run out.

• Make sure that the medicines you have at home have not reached the ‘best before’ or ‘use by’ date on the packaging. Give old medicines to your pharmacist to dispose of.

Where should I keep this medicine?

• Keep the medicine in a cupboard, away from heat and direct sunlight. It does not need to be kept in the fridge.
• Make sure that children cannot see or reach the medicine.
• Keep the medicine in the container it came in.

Who to contact for more information?

Your doctor, pharmacist or nurse will be able to give you more information about Tacrolimus and about other medicines used to treat nephrotic syndrome.

Copyright disclaimer

Version [1]. © NPPG, RCPCH and WellChild, all rights reserved. Review by May 2027.

The primary source for the information in this leaflet is the British National Formulary for Children. For details on any other sources used for this leaflet, please contact us through our website, www.medicinesforchildren.org.uk.

We take great care to make sure that the information in this leaflet is correct and up-to-date. However, medicines can be used in different ways for different patients. It is important that you ask the advice of your doctor or pharmacist if you are not sure about something. This leaflet is about the use of these medicines in the UK, and may not apply to other countries. The Royal College of Paediatrics and Child Health (RCPCH), the Neonatal and Paediatric Pharmacists Group (NPPG), WellChild and the contributors and editors cannot be held responsible for the accuracy of information, omissions of information, or any actions that may be taken as a consequence of reading this leaflet.