Ciclosporin after Bone Marrow Transplant

Ciclosporin is a medicine that is used to treat many different conditions. It belongs to a group of medicines known as immunosuppressive agents. These medicines are used to lower the body’s immune response to prevent rejection of organs such as kidneys after a transplant. It is also used both before and after bone marrow transplants.

Ciclosporin is given by mouth in the form of capsules or liquid. It can also be given as an infusion into a vein (intravenously) through a central venous catheter, implantable port or PICC. It is usually given twice a day. Some children are taking a dose that means they will be given a combination of the liquid and capsules.

The liquid can be mixed with a strong tasting liquid such as orange juice, squash or apple juice to improve the taste. It can also be mixed with water. The liquid should be mixed immediately before taking, rinsing the glass with some more liquid to make sure none of the medicine is left behind. You must always use the same liquid for each dose.

The prescriber must always specify the brand of ciclosporin because even at the same dose, there are differences in how much actually gets into the body. You must always ensure that you obtain the same brand each time unless your doctor has advised you otherwise.

Your child may have a blood test to monitor the amount of medicine in their blood. Doses of the medicine may be changed depending on the result.

Anti-sickness drugs can be given to reduce or prevent these symptoms. Please tell your doctor or nurse if your child’s sickness is very bad or continues for more than a few days.

These symptoms can be reduced or prevented by giving your child painkillers. Mild painkillers, such as paracetamol, are usually enough to prevent headaches due to ciclosporin. If your child has headaches, please tell your doctor as the dose of ciclosporin may need to be changed.

If this concerns your child, please tell your doctor.

If your child complains of shakiness or tremor, please tell your doctor, as the dose of ciclosporin may need to be changed.

This is a common problem. However, very thorough teeth cleaning will reduce the overgrowth but does not prevent it. If your child’s gums overgrow, it can be treated with intensive cleaning, use of a special spray or gel twice a day or with a small operation.

While your child is taking this medicine, they should use an effective sunscreen (SPF 50 or above) and wear a hat whenever outdoors.

Please tell your doctor if your child complains of this, as their ciclosporin dose may need to be changed.

Ciclosporin may cause mild changes to your child’s kidney function. This should return to normal when treatment stops. Blood tests may be needed on a regular basis to check how well your child’s kidneys are working.

This should also return to normal when your child stops treatment. Their blood pressure will be checked on a regular basis and medicine given if needed to lower it.

This may mean that your child needs to take magnesium supplements to bring the concentration of magnesium in the blood up to the right level. Your doctor will decide if this is necessary.

There is a very small chance that some children on long-term ciclosporin might develop a type of tumour. If you feel you need more information about this, please talk to your child’s doctor.

Ciclosporin must not be handled or given to patients who may be pregnant or are likely to become pregnant in the near future. This includes anyone who is giving the medicine to your child.

If your daughter is ten years old or older, we will ask her about her periods and any possibility that she could be pregnant. If your daughter is sexually active, she must use a reliable form of contraception.

If you are concerned about any of these side effects, please discuss them with your doctor or pharmacist.

People with the following conditions should discuss taking Ciclosporin with their doctor:

• malignancy (in non-transplant indications)
• uncontrolled hypertension (in non-transplant indications)
• uncontrolled infections (in non-transplant indications)

Some medicines can interact with ciclosporin.

Always check with your doctor or pharmacist before giving your child any other medicines, including herbal or complementary medicines.

Grapefruit juice can increase the amount of ciclosporin absorbed from the stomach so it is best avoided while taking ciclosporin.

Please discuss with your doctor or pharmacist before giving them to your child.

If your child is on ciclosporin and has not had chickenpox but comes into contact with someone who has chicken pox or shingles (either face to face or longer than 15 minutes in the same room), you should report to your doctor immediately as your child may be at risk of developing a more severe form of the infection and may need special treatment.

If your child develops chicken pox or shingles, you should also report to your doctor immediately for medication (antivirals) to be given.

If you are unsure whether your child has had chicken pox before starting ciclosporin, their immunity should be checked with a simple blood test at that time and the result entered on the parent-held record.

Your doctor will advise you if your child should avoid immunisation after transplant. Your child should NOT have any live vaccinations such as MMR, oral polio, chicken pox or BCG while taking ciclosporin. Inactivated or killed vaccines such as influenza/flu, meningitis C, pneumococcal, hepatitis, Hib, tetanus, diphtheria, whooping cough/pertussis and the killed version of the polio immunisation are permitted if the patient is stable under treatment.

If you have other children who need vaccines while your child is taking ciclosporin, they should have these as normal, but they should also receive the ‘killed’ or inactivated polio vaccine. If you have any questions about vaccines and immunisations, please ask your doctor.

• Keep all medicines in a safe place where children cannot reach them.
• Ciclosporin should be kept in a cool, dry place away from direct sunlight or heat.
• If your child is taking ciclosporin liquid, it can only be used for two months once opened. Write the date you opened the bottle on the label to remind you.
• You should handle this medicine with care, avoiding touching it where possible. If you are pregnant or think you could be pregnant, please discuss handling instructions with your doctor, nurse or pharmacist. Please see our Special handling requirements information sheet for further details.
• If your child vomits straight after taking the dose, inform your local doctor or nurse, as your child may need to take another one. Do not give them another dose without informing the doctor or nurse.
• If you forget to give your child a dose, give it as soon as you remember. Do not give a double dose if it is already time to give the next one. Inform your doctor or nurse and keep to your child’s regular schedule.
• If your doctor decides to stop treatment with ciclosporin or the medicine passes its expiry date, return any remaining medicine to the pharmacist. Do not flush them down the toilet or throw them away.
• Some medicines will need to be ordered by your local pharmacist - ask your GP for another prescription with enough time (when you have about 2 weeks of your medicine left) to ensure you do not run out.

For further information please contact:

Medicines Information: 020 7829 8608 or via the Medications page on the MyGOSH app (available Monday-Friday, 9am - 5pm excluding Bank Holidays)

GOSH switchboard: 020 7405 9200 or contact your clinical team directly via the MyGOSH app