Oxford Paediatric and Adolescent Rheumatology Centre Cyclophosphamide (Endoxana®) What is cyclophosphamide? Cyclophosphamide may be used to control over-activity of the immune system. It does this by reducing the number of cells causing inflammation. Why is this drug prescribed for my child? Cyclophosphamide is used to treat severe inflammation when other treatments have not worked. In particular, it is used to treat children with juvenile dermatomyositis, systemic lupus erythematosus, and vasculitis. It is also used by other paediatricians to treat children with diseases specifically affecting the kidney and brain and is used to treat cancer, but in much higher doses than we use. This medication is potent and may have serious side effects. You should consult your doctor if you have further questions or if early warning signs develop while you are taking this medication. How is this drug given? Cyclophosphamide is given as a 2-3 weekly injection in hospital followed by 2-3 weekly courses of oral cyclophosphamide over 3 days at home. This treatment regime lasts up to 5 months. Sometimes cyclophosphamide is given just by injection in hospital on a monthly basis. What side effects may occur? The table overleaf identifies the possible side effects. Patients are at risk from side effects but in most patients they do not occur. In particular, side effects from no. 7 onwards are very rare in children. Children cope very well with the medication and remain free from side-effects. Other drugs and fluid are given at the time of cyclophosphamide to greatly reduce the risk of side effects. This includes anti-sickness medication and a drug called MESNA that protects the bladder. Drinking plenty of fluids should be encouraged for at least 24hours post last dose, particularly when given orally. Your doctor will discuss the side effects and other medications with you and if you have any other questions at any time please ask the rheumatology team. Your doctor has decided to use cyclophosphamide having compared the risks to your child from their disease with the risks from the use of cyclophosphamide What tests will be necessary? Regular blood and urine tests are performed before each dose of cyclophosphamide and 10 days afterwards if required. These tests are essential for early detection of possible side effects and as a result prevent or reduce any damage to major organs. What Foods or Medications should be avoided? Cyclophosphamide tablets should be taken an hour before food or on an empty stomach, preferably in the morning. Patient Information Oxford Paediatric and Adolescent Rheumatology Centre Patients or parents should always check with a pharmacist or doctor for drug interactions when a new medicine is added to treatment. Important information you should know for oral cyclophosphamide • Keep all medicines and tablets in a safe place where children cannot reach them. • Store at room temperature. • You should handle these drugs with care. Avoid touching the drugs wherever possible. If you are the parent or carer administering the cyclophosphamide, you must wear a pair of household rubber gloves to protect yourself. • They should be taken as directed by your doctor, nurse or pharmacist. • If your child vomits after taking the dose, inform the doctor or nurse as your child may need to take another dose. Do not give them another dose without informing the doctor or nurse. • If you forget to give your child their dose, do not give them a double dose. Inform your doctor or nurse and keep to your child’s regular schedule. • If your child cannot swallow tablets, you can disperse them as follows: 1. Put on a pair of disposable gloves. 2. Attach a blue cap to a 5ml oral syringe. Pull out the plunger and place required tablets inside the syringe. 3. Place approx 3.5ml of water in the syringe. Put the plunger back gently, forming a seal within the barrel of the syringe. Do not force the air out of the syringe. 4. Gently invert the syringe and fluid until the tablet(s) are dispersed. 5. The medicine can then be given to your child, making sure he/she is in an upright position. 6. Place the tip of the syringe just inside your child’s mouth, pointing towards the inside of the cheek. Press the plunger slowly to allow him/her to swallow. Squirting the medicine in quickly may cause choking. 7. The syringe and plunger may be rinsed in plenty of water and allowed to dry on absorbent kitchen roll. • If you accidentally spill the tablets or mixture, wash the area thoroughly with plenty of water and mop up with kitchen roll. Wash the area with more soapy water. • If the mixture accidentally gets into your eyes, wash with plenty of running water for 5-10 minutes. • Used paper towels, vomit and dirty disposable nappies should be double bagged and placed in the household rubbish bag. • If the doctor decides to stop treatment, return any remaining tablets to the pharmacist. Do not flush or throw them away. Side Effect 1 mouth ulcers* 2 nausea, vomiting, abdominal pain, diarrhoea* Warning Signs To reduce this side effect Anti sickness medication given just in case Patient Information Oxford Paediatric and Adolescent Rheumatology Centre 3 Hot flushes during drug infusion * 4 loss of hair* 5 rash* 6 low blood counts* easy bruising/bleeding, infection 7 infections fever 8 low sperm counts in post pubescent males Slow infusion of the drug Very rare effects 8 bladder inflammation* drink extra water (please smoky or reddish urine or ask your doctor how much a painful urination day) cancer of bladder smoky or reddish urine, or blood are 9 particularly rare in weight loss, swelling of the lymph glands children and dose dependent temporary or permanent 10 cessation of menstrual periods *If occurs - usually mild and returns to normal when the medication dose is reduced or stopped Other important information Cyclophosphamide can cause miscarriage or birth defects. Female patients should NOT become pregnant while taking these medications and must use reliable contraceptive measures to prevent this. Male patients should wait three months after stopping cyclophosphamide before having children as it can affect the quality and/or amount of sperm. Pregnant mums or mums that might become pregnant while their child is on cyclophosphamide must NOT handle the tablets and should wear gloves when changing nappies etc. Good mouthcare is also very important while taking cyclophosphamide so clean teeth with a soft, small headed brush and a pea-sized blob of toothpaste, using small gentle strokes after meals and before bed. Certain vaccinations/ immunisations should not be given while taking cyclophosphamide. If you are planning to have vaccinations, check with your doctor first. While your child is on cyclophosphamide we also recommend that family members do not receive the live polio vaccine. Patient Information Oxford Paediatric and Adolescent Rheumatology Centre If your child taking cyclophosphamde is in close contact with someone who develops chickenpox or develops chickenpox themselves please let your doctor know as soon as possible. If you are unwilling to have regular blood tests or to use reliable contraception, your doctor may have to stop treating you with cyclophosphamide Contact details: Advice line 01865 737656; Secretary 01865 738049 Patient Information