Ciclosporin (cyclosporine, Neoral): immune-suppressing medicine explained

Ciclosporin belongs to a group of medicines known as immunosuppressive agents, according to the manufacturer leaflet for Deximune. These medicines are used to lower the body’s immune reactions. In rheumatology it is classed as a disease-modifying anti-rheumatic drug (DMARD), which Arthritis UK explains as a treatment that reduces activity in an overactive immune system and helps prevent damage to joints.

You may see the name written several ways. Ciclosporin is the international non-proprietary name used in UK medicine documents; cyclosporine is the US spelling that appears on older pages and in American drug names. Neoral, Deximune and Capimune are UK brands. Because brands can be absorbed differently, the brand name on your prescription matters and should not be changed without your specialist knowing.

It is a prescription medicine started and supervised by a specialist. The leaflet says that after a transplant it will only be prescribed by a doctor with experience in transplants or autoimmune diseases.

The leaflet describes two broad uses. After an organ, bone marrow or stem cell transplant, ciclosporin prevents rejection by blocking the development of certain cells that would normally attack the transplanted tissue. In autoimmune disease it stops the immune reaction attacking the body’s own cells, and the leaflet lists eye problems that threaten vision (endogenous uveitis, including Behcet’s uveitis), severe cases of atopic dermatitis (eczema) and psoriasis, severe rheumatoid arthritis and nephrotic syndrome.

Arthritis UK says ciclosporin can reduce pain, swelling and stiffness in rheumatoid arthritis and is also used for psoriatic arthritis and lupus. It stresses that it is a long-term treatment, that it may be up to four months before you notice the benefits, and that it is important to keep taking it even if it does not seem to be working at first, unless there are severe side effects.

The NHS Blood and Transplant medicines page for kidney transplants notes that different transplant centres use different medicines to prevent rejection, so the combination you receive depends on your centre. The leaflet says ciclosporin should not be taken together with some other medicines, so your specialist will explain how it fits with the rest of your regimen.

Arthritis UK says ciclosporin can raise blood pressure and affect the kidneys, and can sometimes increase blood fat levels such as cholesterol. Your doctor will check your blood pressure and arrange a blood and urine test before you start, then regular blood tests and frequent blood pressure checks. You may be asked to keep a record booklet of results and take it to appointments.

The leaflet says the doctor will check ciclosporin levels in your blood, especially after a transplant, your blood pressure, how well your liver and kidneys are working and your blood lipids. It also asks you to tell your doctor about infection signs such as a fever or sore throat, because ciclosporin suppresses the immune system, and about liver or kidney problems, high potassium, low magnesium or gout.

Ciclosporin may not be suitable if you have kidney problems, high blood pressure that is not controlled by medication, gout or high urate levels, or have had cancer. The leaflet adds that for non-transplant conditions it should not be taken if you have an infection that is not controlled, any type of cancer, or uncontrolled high blood pressure, and that if high blood pressure develops and cannot be controlled, the medicine should be stopped by the doctor.

Arthritis UK lists nausea, diarrhoea, headache, gum overgrowth, tiredness and excess hair growth among the things to report to your doctor or rheumatology nurse. It says you should stop ciclosporin and see your doctor immediately if any of these symptoms are severe. To improve side effects your dose may be reduced.

Infection is a particular concern. Arthritis UK says you should see your doctor if you develop chickenpox or shingles or come into contact with someone who has them, because these can be severe in people on treatments that affect the immune system; you may need antiviral treatment, and ciclosporin is usually stopped until you are better.

Because ciclosporin suppresses immunity, the leaflet says it increases the risk of cancers, particularly of the skin and lymphoid system, and advises limiting sunlight and UV exposure with protective clothing and a high-protection sunscreen. People treated for psoriasis or atopic dermatitis must not be exposed to UVB rays or phototherapy during treatment.

The leaflet also notes that it contains an ingredient that is broken down into alcohol, so people with a history of alcohol-related problems, epilepsy or liver problems should talk to their doctor first. Report any suspected side effect through the MHRA Yellow Card scheme or to your team.

The leaflet lists many medicines that can raise or lower ciclosporin levels or add to kidney risk. Those that may increase levels include some antibiotics such as erythromycin and azithromycin, antifungals, diltiazem, verapamil, amiodarone, metoclopramide, oral contraceptives, allopurinol and colchicine. Those that may decrease levels include barbiturates, carbamazepine, phenytoin, antibacterial medicines used to treat tuberculosis, orlistat, terbinafine and St John’s wort. Medicines that may affect the kidneys include gentamicin, ciprofloxacin, trimethoprim, NSAIDs such as diclofenac and tacrolimus. You should not take it with products containing St John’s wort.

Arthritis UK advises that NSAIDs should only be taken on the advice of your GP or rheumatologist and that over-the-counter and herbal remedies should be discussed with your doctor, rheumatology nurse or pharmacist first. Always tell anyone treating you, including dentists, that you take ciclosporin.

On grapefruit, Arthritis UK says to avoid grapefruit and pomelo juice, and to take capsules with water; the leaflet says do not take Deximune with grapefruit or grapefruit juice because they can affect how it works.

On vaccines, Arthritis UK says to avoid live vaccines such as yellow fever, although in certain situations a live vaccine may be needed after discussion of risks and benefits. The shingles vaccination is not a live vaccine and can be given, and pneumococcal and yearly flu vaccines are recommended.

Arthritis UK says current guidelines state that ciclosporin can be taken during pregnancy, that it passes into breast milk but is barely detectable in babies, and that men can take it while trying for a baby. The manufacturer leaflet is more cautious: it says experience in pregnancy is limited, that in general it should not be taken during pregnancy unless necessary, and that breastfeeding is not recommended. The two documents differ, so this is a decision to make with your specialist before conception rather than afterwards.

On alcohol, Arthritis UK says there is no particular reason to avoid it and that it is fine in moderation.

Ciclosporin is prescribed on the NHS through transplant, rheumatology, dermatology, nephrology and eye clinics, with monitoring shared between the specialist team and, in some areas, your GP. Wherever it is prescribed, the monitoring requirements are the same, and you should know who is responsible for your blood tests and when they are due.