Ciclosporin is known as an immunosuppressant medicine. It is used at Great Ormond Street Hospital (GOSH) to treat certain types of chronic inflammatory conditions like systemic lupus erythematosus (SLE), vasculitis, eczema and Crohn’s disease.
Ciclosporin works by suppressing (damping-down) the immune system. The aim of this medicine is to control inflammation and put the disease into remission.
Your child will not notice any immediate effects of taking ciclosporin as it can take some weeks to start working. Most children take ciclosporin for about two to three years. When your child has been in remission for a year or two, the dose will be gradually reduced and then stopped.
How is ciclosporin given?
Ciclosporin is given by mouth in the form of capsules or liquid. Some children may take a dose that means they will be given a combination of 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.
Who should not take ciclosporin?
People with the following conditions may not be able to take ciclosporin:
- Hypersensitivity to ciclosporin or any of its ingredients.
- Pregnant, could be pregnant, trying to become pregnant or breastfeeding.
- Existing liver or kidney problems.
- High blood pressure.
What are the side effects?
- Nausea and vomiting – these symptoms can be reduced by starting with a low dose of ciclosporin and increasing it over time. Taking the medicine after meals can also help. Please tell your doctor if your child’s sickness is not controlled or persists.
- Headache – 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.
- Excess hair growth – if this concerns your child, please tell your doctor.
- Mild shakes – if your child complains of shakiness or tremor, please tell your doctor as the dose of ciclosporin may need to be changed.
- 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 the dose of ciclosporin 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.
- 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 aged 10 years 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 medicines.
Ciclosporin, as liquid or capsules, can react with grapefruit and grapefruit juice. It should not be given at the same time as grapefruit juice or any drinks containing it. It should also be avoided for one hour before and after each dose.
Keep medicines in a safe place where children cannot reach them.
Keep the ciclosporin liquid and capsules at room temperature, away from bright light or direct sunlight and away from heat.
If your doctor decides that your child should stop taking ciclosporin or the medicine passes its expiry date, please return it to your pharmacist. Do not flush it down the toilet or throw it away.
If you forget to give your child a dose and it is within a few hours of when the dose was due, give it as soon as you remember. Otherwise, do not give this dose but wait until the next dose is due. Do not give a double dose.
Special handling precautions apply with ciclosporin.
Please read our leaflet Special handling of immunosuppressant medicines for further information.
Your child will need to have regular blood tests with your family doctor (GP) or local paediatrician. These blood tests check for the less common side effects mentioned previously. You will be given a card to record these results – please remember to bring it to your child’s clinic appointment.
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 your child is on ciclosporin and has not had chicken pox 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 aciclovir 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.
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.