Your child needs to take the medicine called cyclophosphamide (say: sye-kloe-FOSS-fa-mide) to treat relapses of nephrotic syndrome. This information sheet explains what cyclophosphamide does, how to give it, and what side effects or problems your child may have when they take this medicine.
What is cyclophosphamide?
Cyclophosphamide is a medicine that lowers the body's natural immunity. The immune system is thought to be involved in nephrotic syndrome. If your child is having too many relapses of nephrotic syndrome, your doctor may prescribe cyclophosphamide.
You may hear cyclophosphamide called by its brand names, Cytoxan or Procytox. Cyclophosphamide comes in a tablet and liquid form.
Before giving cyclophosphamide to your child
Tell your health care professional if your child:
- has had an allergic reaction to cyclophosphamide
- may be pregnant
Talk with your doctor, pharmacist, or Nephrology Clinic nurse if your child has any of the following conditions. This medicine may not be right for your child if they have:
- infection: cyclophosphamide can decrease the body's ability to fight infection
- chickenpox (including recent exposure) or herpes zoster (shingles): cyclophosphamide may increase the risk of severe disease affecting other parts of the body
- liver disease: the effect of cyclophosphamide may be decreased
- bladder or kidney problems
How should you give your child cyclophosphamide?
- Give this medicine for as long as your doctor or Nephrology Clinic nurse tells you, even if your child seems better.
- Talk to your child's doctor or Nephrology Clinic nurse before you stop giving this medicine or before you change the dose. Your child may become ill if they stop this medicine suddenly.
- Give your child cyclophosphamide at the same time every day (exactly as your child's doctor, pharmacist, or Nephrology Clinic nurse tells you).
- You can give cyclophosphamide with or without food.
- It is best to give cyclophosphamide in the morning. This reduces the chance of getting bladder problems.
- If your child is taking liquid cyclophosphamide, give your child cyclophosphamide with the special spoon or syringe that the pharmacist gave you.
- Try to get your child to drink lots of liquid on the days they take cyclophosphamide. Ask your child's doctor or Nephrology Clinic nurse how much liquid your child should drink each day.
What should you do if your child cannot swallow the tablet whole?
If tablets cannot be swallowed, the liquid should be used. If tablets must be supplied, speak to the pharmacist or nephrology clinic nurse about how to safely prepare a dose.
What should you do if your child misses a dose of cyclophosphamide?
- Give the missed dose as soon as you remember.
- If it is almost time for the next dose, skip the missed dose. Give the next dose at the regular time.
- Do not give your child two doses to make up for one missed dose.
What should you do if your child throws up after you give cyclophosphamide?
If your child throws up within one hour after cyclophosphamide, call your child's doctor or Nephrology Clinic nurse. Ask if you should give the cyclophosphamide again.
How long does cyclophosphamide take to work?
It may take several weeks for cyclophosphamide to make a difference in your child's condition.
What are the possible side effects of cyclophosphamide?
Your child may have some of these side effects while they take cyclophosphamide. Check with your child's doctor or Nephrology Clinic nurse if your child continues to have any of these side effects and they do not go away or they bother your child:
- upset stomach, vomiting (throwing up)
- flushing (face turning red and warm)
- stuffy nose, headache, pain across the cheekbones
- darkening of the skin and fingernails
Call your child's doctor or Nephrology Clinic nurse during office hours if your child has any of these side effects:
- unusual tiredness or weakness
- uncontrolled diarrhea
- sores on the lips, tongue, mouth, or throat
- missing monthly, menstrual periods
Most of the following side effects are not common, but they may be a sign of a serious problem. Call your child's doctor or Nephrology Clinic nurse right away or take your child to the Emergency Department if your child has any of these side effects:
- fever or chills
- cough or sore throat
- unusual bleeding or bruising
- burning feeling or pain when urinating
- pain in the lower back or side
- blood in the urine or in the stool
- black, tarry stools
- trouble breathing or shortness of breath
- fast heartbeat
- dizziness, confusion, or agitation
- yellow eyes or skin
After your child stops cyclophosphamide, it may still cause side effects. Check with your child's doctor right away if your child has blood in their urine, even after they have stopped cyclophosphamide.
What safety measures should you take when your child is using cyclophosphamide?
Cyclophosphamide may lower the number of white blood cells in the blood and this increases your child's chances of getting an infection.
Your child will need to have a blood test done every week to make sure that certain white blood cells don't decrease too much. The dose may need to be lowered or temporarily held if the white blood cells decrease too much. Your clinic nurse will notify you if any change is required in the dose of the medicine.
Watch your child closely for signs of infection such as a fever, chills, cough, and sore throat. Contact your child's doctor or Nephrology Clinic nurse right away if you notice any signs of infection.
Cyclophosphamide can lower the number of platelets in the blood, which means your child may bleed more easily. You can do these things to prevent bleeding:
- Be careful not to cut your child when using a razor, scissors, or clippers to cut their nails or hair.
- Do not let your child play rough sports in which they may get bruised or injured.
- Be careful when using a toothbrush, dental floss, or toothpick. Your doctor, nurse, or dentist can tell you about other ways to clean your child's mouth and teeth.
Your child should not receive any immunizations (vaccines) without your doctor's approval.
Cyclophosphamide may decrease kidney function, usually if blood levels of cyclophosphamide are too high. This is why blood work is checked frequently so that the dose of cyclophosphamide can be adjusted.
Try to get your child to empty the bladder every two hours while awake and at bedtime. The doctor may also want your child to get up to empty the bladder in the night. This helps prevent problems with the bladder and kidneys.
Avoid grapefruit and grapefruit juice when taking cyclophosphamide. These increase the amount of cyclophosphamide in the blood, which may cause more side effects. Read the labels (front and back) of mixed fruit juices to ensure that they do not contain grapefruit juice.
Cyclophosphamide may cause sores in the mouth. Rinse your child's mouth with a mouthwash made from baking soda to help keep it clean. Your nurse or pharmacist can tell you how to make this. Do not use store-bought mouthwash as it may sting and cause a dry mouth.
Cyclophosphamide may cause birth defects. If you think your child may become pregnant, talk to your doctor or Nephrology Clinic nurse about birth control. Tell the doctor or nurse right away if your child is pregnant.
Check with your child's doctor or pharmacist or Nephrology Clinic nurse before giving your child any other medicines (prescription, non-prescription, herbal, or natural products).
What other important information should you know about cyclophosphamide?
- Tell your doctor and dentist that your child is getting cyclophosphamide before your child has any operation or procedure, even on the teeth.
- Your child may lose his or her hair. This is rare at the doses used to treat nephrotic syndrome. The hair will grow back when your child stops getting cyclophosphamide. The colour and feel of your child's hair may change when it grows back.
- After taking cyclophosphamide, your child may not be able to have children of their own. This is rare at the doses used to treat nephrotic syndrome.
- If you or anyone else in your household may be pregnant, you should avoid handling cyclophosphamide.
- Make sure you always have enough cyclophosphamide to last through weekends, holidays, and vacations. Call your pharmacy at least two days before your child runs out of medicine to order refills.
- Keep cyclophosphamide tablets at room temperature in a cool, dry place away from sunlight. Do not store it in the bathroom or kitchen.
- Keep cyclophosphamide liquid in the refrigerator. Do not freeze this medicine.
- Do not keep any medicines that are out of date. Check with your pharmacist about the best way to throw away outdated or leftover medicines.
Keep cyclophosphamide out of your child’s sight and reach and locked up in a safe place. If your child takes too much cyclophosphamide, call your local Poison Information Centre at one of these numbers. These calls are free.
- Call 1-844 POISON-X, or 1-844-764-7669, from anywhere in Canada except Quebec.
- Call 1-800-463-5060 if you live in Quebec.