Cyclophosphamide 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
Why is it important for my child to take Cyclophosphamide?
Your doctor may recommend this treatment if your child’s nephrotic syndrome doesn’t get better with steroid treatment or keeps coming back. Usually cyclophosphamide is taken for 8–12 weeks. It should help to make the nephrotic syndrome get better (go into or stay in remission).
What is Cyclophosphamide available as?
- Tablets: 50 mg
- Liquid medicine can be ordered specially from your pharmacist
When should I give Cyclophosphamide
Cyclophosphamide is usually given once each day. This is usually in the morning.
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 Cyclophosphamide (the dose) that is right for your child. The dose will be shown on the medicine label.
Your child’s doctor or nurse will measure how much protein is in their urine (wee), measure how well their kidneys are working and test their blood to make sure the dose is correct.
It is important that you follow your doctor’s instructions about how much to give.
How should I give Cyclophosphamide?
- Tablets should be swallowed with a glass of water, squash or juice. Your child should not chew the tablet.
- Shake the medicine well. Measure out the right amount using an oral syringe or a medicine spoon. You can get these from your pharmacist. Do not use a kitchen teaspoon as it will not give the right amount.
When should the medicine start working?
The medicine should start working straight away although you will not see any difference in your child. The aim is to increase the time that your child’s nephrotic syndrome stays in remission, so it will take some time to know if it has helped.
What if my child is sick (vomits)?
- If your child is sick less than 30 minutes after having a dose of Cyclophosphamide, give them the same dose again.
- If your child is sick more than 30 minutes after having a dose of Cyclophosphamide, 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?
Give the missed dose when you remember during the day, as long as this is at least 12 hours before the next dose of Cyclophosphamide is due.
Never give a double dose of Cyclophosphamide.
What if I give too much?
If you think you may have given your child too much Cyclophosphamide, 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 Cyclophosphamide.
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 immediately if your child develops any signs of infection such as fever (temperature above 38°C), chills, sore throat, cough or rash.
Other side-effects you need to know about
- Your child may feel sick or be sick (vomit) and they may get diarrhoea. Giving the medicine with some food or a small glass of milk may help. These effects should wear off as your child gets used to the medicine. If they are still a problem after 2 weeks, or you are worried, contact your doctor.
- Your child may notice a strange taste in their mouth while they are taking cyclophosphamide. Eating citrus fruits (e.g. oranges) and taking sips of water may help. This should wear off after a few weeks.
- Cyclophosphamide may affect your child’s blood.
- They may bruise more easily.
- It may take longer than usual for bleeding to stop.
- They may get nose bleeds and their gums may bleed when they brush their teeth.
- 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 get sores in their mouth or on their lips. You can help prevent this by making sure your child brushes their teeth regularly and uses a mouthwash after brushing. If you are worried, or the sores are very painful, contact your doctor for advice.
- Rarely, cyclophosphamide can irritate the bladder and your child may have blood in their urine (wee). Taking the medicine first thing in the morning with plenty of liquid should prevent this.
Your child’s hair may become thinner and some may fall out. It should grow back when the medicine is stopped. Discuss this with your doctor at your next visit.
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 Cyclophosphamide?
- You can give your child medicines that contain paracetamol or ibuprofen, unless your doctor has told you not to.
- 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.
If your child is due to have an immunisation (vaccination), tell your nurse or doctor that they are taking Cyclophosphamide. Some vaccines should not be given.
- Your doctor will test your child’s blood regularly to check that Cyclophosphamide has not affected their liver, kidneys or blood.
- Cyclophosphamide 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.
- Cyclophosphamide 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.
General advice about medicines
- Try to give medicines at about the same times each day, to help you remember.
- 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.
- 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 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.
- 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.
- Avoid touching the tablets as much as possible.
Who to contact for more information?
Your doctor, pharmacist or nurse will be able to give you more information about Cyclophosphamide 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
Version . © NPPG, RCPCH and WellChild, all rights reserved. Review by May 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.