Ciclosporin for nephrotic syndrome
This leaflet is for parents and carers about how to use this medicine in children. Our information may differ from that provided by the manufacturers, because their information usually relates to adults. Read this leaflet carefully. Keep it somewhere safe so that you can read it again.
Name of medicine
Brand names: Capimune, Deximune, Neoral
Why is it important for my child to take Ciclosporin?
Your doctor may recommend this treatment if your child’s nephrotic syndrome doesn’t get better with steroid treatment or keeps coming back. Ciclosporin should help to make the nephrotic syndrome get better (go into and stay in remission).
What is Ciclosporin available as?
Your child should stay on the same brand (e.g. Neoral) of ciclosporin (unless your doctor tells you otherwise). Always check the packet and ask the pharmacist if you are given a different brand.
- Deximune capsules (grey): 25 mg, 50 mg, 100 mg
- Neoral capsules: 10 mg (yellow/white), 25 mg (blue/grey), 50 mg (yellow/white), 100 mg (blue/grey)
- Capimune capsules: 25 mg (grey), 50 mg (white), 100 mg (grey)
- Liquid medicine: 500 mg in 5 mL
Ciclosporin preparations contain a small amount of alcohol. If you have any concerns or questions, speak with your child’s doctor or pharmacist.
When should I give Ciclosporin
The Ciclosporin is usually given twice each day. Give one dose in the morning and one in the evening. Ideally these times are 10–12 hours apart. For example, this could be between 7am and 8am and between 7pm and 8pm.
Give the medicine at about the same time(s) each day so that this becomes part of your child’s daily routine, which will help you to remember.
How much should I give?
Your doctor will work out the amount of Ciclosporin (the dose) that is right for your child. The dose will be shown on the medicine label.
Your doctor will measure the amount of Ciclosporin in your child’s blood, usually in the morning. On the day of the blood test, delay the Ciclosporin morning dose until after the blood test.
It is important that you follow your doctor’s instructions about how much to give.
How should I give Ciclosporin?
- Capsules should be swallowed with a glass of water, milk or juice (not grapefruit juice). Your child should not chew the capsule.
- Measure out the right amount using an oral syringe or dropper. Your pharmacist will make sure you have the right device for measuring out the correct dose for your child.
- Do not use a kitchen teaspoon as it will not give the right amount. Dry the dropper or syringe after use, but do not rinse it out.
- To hide the taste of the liquid medicine, you can add the dose into a small glass of milk or fruit juice (preferably at room temperature). Do not use grapefruit juice, as this affects the Ciclosporin level. Your child should drink all the mixture straight away. Then add some more juice or milk to the glass, swirl it round and ask your child to drink the liquid so they get all the medicine.
Your child should not eat grapefruit or drink grapefruit juice for at least 1 hour before giving Ciclosporin, as it may interfere with the medicine.
When should the medicine start working?
It may take up some weeks or even months for Ciclosporin to work properly. Your child may need to take Ciclosporin for many months or some years.
What if my child is sick (vomits)?
- If your child is sick less than 30 minutes after having a dose of Ciclosporin, give them the same dose again.
- If your child is sick more than 30 minutes after having a dose of Ciclosporin, 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?
If you remember up to 4 hours after you should have given a dose, give your child the missed dose.
For example, if you usually give a dose at about 7 am, you can give the missed dose at any time up to 11 am. If you remember after that time, do not give the missed dose. Wait until the next normal dose. You do not need to wake up a sleeping child to give a missed dose.
Never give a double dose of Ciclosporin.
What if I give too much?
If you think you may have given your child too much Ciclosporin, contact your doctor or local NHS services (details at end of leaflet) or take your child to hospital. Have the medicine container or packaging with you, even if it is empty. This will be useful to the doctor.
It may be dangerous to give too much Ciclosporin.
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
Contact your doctor straight away if your child has a fever (temperature above 38°C) with a sore throat or cough, or if they have unusual bleeding that is difficult to stop, or severe bruising.
Very rarely, children can have headaches and visual disturbances. If this happens, contact your doctor straight away.
Other side-effects you need to know about
- Your child may get stomach cramps, nausea (feeling sick), be sick (vomit), or get diarrhoea or headaches when they first start taking ciclosporin. These effects should wear off as your child gets used to the medicine. If they are still a problem after 2 weeks, contact your doctor.
- Your child may get a burning feeling or tingling in the hands or feet during the first week of taking ciclosporin.
- Your child’s gums may become tender or swollen, and may bleed when they brush their teeth. You can help prevent this by making sure that your child brushes and flosses their teeth regularly and massages their gums. Contact your doctor or dentist if you are concerned.
- Your child is more likely to get infections and they may take longer than usual to fight these off. They may also become ill very quickly, in which case you should contact your doctor.
- Your child may experience an increase in the growth of hair on their body.
- Your child may be more tired than usual or develop tremor (shakiness), muscle cramps, or pins and needles.
- Girls may find their periods become irregular or stop but they will return to normal after stopping the treatment.
Your child’s skin may become more sensitive to sunlight. Keep them out of strong sun. When outdoors, they should wear a long-sleeved top, trousers and a hat and should use a high-factor sun cream (at least SPF 30).
There may sometimes be other 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 a UK safety scheme at www.mhra.gov.uk/yellowcard
Can other medicines be given at the same time as Ciclosporin?
- You can give your child medicines that contain paracetamol or ibuprofen, unless your doctor has told you not to.
- Ciclosporin should not be taken with some medicines. Tell your doctor or pharmacist about any other medicines your child is taking before giving Ciclosporin.
- 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?
If your child comes into contact with anyone who has measles, chickenpox or shingles, contact your doctor straight away, as they may need special preventative treatment.
It is important that your child always has the same brand of Ciclosporin, as there may be differences between brands. Keep a record of which medicines your child has.
- Your doctor will test your child’s blood regularly to check that Ciclosporin has not affected their liver, kidneys or blood.
- Your doctor will check your child’s blood pressure regularly while they are taking Ciclosporin.
- Your child should not eat grapefruit or drink grapefruit juice in the hour before taking Ciclosporin.
- Ciclosporin is also used for chemotherapy in cancer, but at a higher dose and for a longer time. You may have heard about some serious side-effects associated with chemotherapy. These are very rare when used for this condition. Talk to your doctor if you are worried.
- Ciclosporin may, rarely, cause infertility in males and females who have reached puberty, but this is very unlikely as it is only used for a short period in people with this condition.
- If Ciclosporin is taken for a long time, it may damage the kidneys or skin and there is a low risk of some forms of blood cancer. Your doctor will discuss this with you before starting this medicine and will do regular blood tests to check for these effects. However, the benefit of taking the medicine is greater than the risk of these effects.
- Ciclosporin may harm an unborn baby. If your daughter is sexually active, it is important that she uses adequate contraception to prevent pregnancy and continues it for at least 1 month after stopping Ciclosporin.
- If your daughter thinks she may be pregnant, she should see her doctor as soon as possible but continue taking Ciclosporin in the meantime.
- If your daughter wants to use the oral contraceptive pill, she must discuss this with her doctor, as this may increase the Ciclosporin levels.
General advice about medicines
- Try to give medicines at about the same times each day, to help you remember.
- Only give this medicine to your child. Never give it to anyone else, even if their condition appears to be the same, as this could do harm.
- 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.
- If you are not sure a medicine is working, contact your doctor but continue to give the medicine as usual in the meantime. Do not give extra doses, as you may do harm.
If you think someone else may have taken the medicine by accident, contact your doctor straight away.
Where should I keep this medicine?
- Keep the medicine in a cupboard, away from heat and direct sunlight.
- Make sure that children cannot see or reach the medicine.
- Keep the medicine in the container it came in.
- Do not keep the liquid medicine in the fridge.
Who to contact for more information?
Your doctor, pharmacist or nurse will be able to give you more information about Ciclosporin and about other medicines used to treat nephrotic syndrome.
England: NHS 111
Scotland: NHS 24
Northern Ireland: NI Direct
Wales: NHS Direct
Tel 111 (free) or 0845 46 47 (2p per minute)111.wales.nhs.uk/
National Kidney Federation
0800 169 09 36www.kidney.org.uk/
National Kidney Federation Patient Association
0800 169 09 36www.kidney.org.uk/pages/category/find-a-support-network
Nephrotic Syndrome Trust (NeST)
Version . © NPPG, RCPCH and WellChild, all rights reserved. Review by November 2015.
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.