Ciclosporin is a medicine that is used to treat many different conditions. It is commonly used to prevent rejection of organs such as kidneys after a transplant, and it is used both before and after bone marrow transplants.
Ciclosporin is also used in lower doses to treat conditions such as juvenile idiopathic arthritis, in which children have problems with stiffness, pain and swelling in their joints.
How is ciclosporin given?
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, an implantable port or PICC. It is 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.
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.
What are the side effects of ciclosporin?
Nausea and vomiting
Anti-sickness medicines 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 also be reduced or prevented by giving your child painkillers. Mild painkillers, such as paracetamol, are usually enough to prevent headaches due to ciclosporin.
Excess hair growth
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.
Gum overgrowth (gingival hypertrophy)
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.
Sensitivity to sun
Avoid excessive exposure to the sun. When your child goes outside, always make sure that they use an effective sunscreen or lotion and wear a hat.
Burning sensation in the feet and hands
Please tell your doctor if your child complains of this, as their ciclosporin dose may need to be changed.
Altered kidney function
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.
Increase in blood pressure
This should also return to normal when your child stops treatment, and will be checked on a regular basis.
Decrease in magnesium levels in the blood
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
Damage to the unborn baby
Ciclosporin must not be given to patients who may be pregnant or are likely to become pregnant in the near future. 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.
Interactions with other medicines
Some medicines can react with ciclosporin, altering how well it works. Always check with your doctor or pharmacist before giving your child any other medicine, including medicines on prescription from your family doctor (GP), medicines bought from a pharmacy (chemist) or any herbal or complementary medicine.
Ciclosporin, as liquid or capsules, can react with grapefruit and affect how well it works. It should not be given at the same time as grapefruit juice (or any drinks containing grapefruit juice). Grapefruit should be avoided for one hour before and after each dose.
Important information about ciclosporin
- 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.
- You should handle these medicines with care, avoiding touching them 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, do not give a double dose. 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 tablets to the pharmacist. Do not flush them down the toilet or throw them away.
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 gets chicken pox or shingles you should also report to your doctor immediately for antibiotics to be given. If you are unsure whether your child has had chicken pox prior to starting ciclosporin, their immunity should be checked with a simple blood test at that time and the result entered on the parent-held monitoring card.
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.
Please read this information sheet from GOSH alongside the patient information leaflet (PIL) provided by the manufacturer. If you do not have a copy of the manufacturer’s patient information leaflet please talk to your pharmacist. A few products do not have a marketing authorisation (licence) as a medicine and therefore there is no PIL.
For children in particular, there may be conflicts of information between the manufacturer’s patient information leaflet (PIL) and guidance provided by GOSH and other healthcare providers. For example, some manufacturers may recommend, in the patient information leaflet, that a medicine is not given to children aged under 12 years. In most cases, this is because the manufacturer will recruit adults to clinical trials in the first instance and therefore the initial marketing authorisation (licence) only covers adults and older children.
For new medicines, the manufacturer then has to recruit children and newborns into trials (unless the medicine is not going to be used in children and newborns) and subsequently amend the PIL with the approved information. Older medicines may have been used effectively for many years in children without problems but the manufacturer has not been required to collect data and amend the licence. This does not mean that it is unsafe for children and young people to be prescribed such a medicine ‘off-licence/off-label’. However, if you are concerned about any conflicts of information, please discuss with your doctor, nurse or pharmacist.