Treatment with ciclosporin This information is for patients who have been prescribed ciclosporin as part of immuno-suppressive treatment (IST) that is given with Anti-Thymocyte Globulin (ATG). It explains what it is, how it works and any potential side effects or complications. What is ciclosporin? In patients who suffer from aplastic anaemia, the immune system misinteprets signals and wrongly attacks the stem cells, that make all of the blood cells in the body. Ciclosporin is an immunosuppressant medicine which has been used for many years to treat aplastic anaemia. It works by restricting the way your immune system reacts against your own bone marrow, suppressing or quietening down your immune system to help your bone marrow heal and recover. As the immune system is suppressed, there is an increased risk of certain types of infections including viral infections while you are taking this drug. But this risk is small for most patients with aplastic anaemia who take ciclosporin. The medicine comes in various forms: • As capsules, which you are most likely to be given• As a liquid• Intravenously, when the drug is administered directly into a vein, usually in your arm Why do I need to take ciclosporin? Ciclosporin can be used on its own as a treatment, but if you have aplastic anaemia it works better when given with Anti-Thymocyte Globulin (ATG). Ciclosporin is either given on its own, or in combination with other treatments for aplastic anaemia such as ATG, anabolic steroids or eltrombopag. Your medical team will discuss with you the reasons for either single treatment or combination treatment. Response rates to treatment Response rates to ATG and ciclosporin are around 70% with a sustained response rate of around 50% for patients with severe aplastic anaemia. For patients taking ciclosporin as a single treatment response rates are 30-40%, and a little higher if you are taking it for non-severe aplastic anaemia. How long do I have to take it? You will take ciclosporin for at least six months and usually longer than that. Your blood counts will be checked regularly to see if they are improving. By ‘blood counts’ we mean: • Your haemoglobin (Hb) level, which is a measure of the number of red cells you have in your blood• Your white blood cells• Your platelets A response to immunosuppressant treatment (such as the drug ciclosporin) in patients with aplastic anaemia, takes time, usually at least 3-4 months. The clinical team will decide the right dose of ciclosporin based on your blood test results. Even after a response has been seen (that is, your blood counts are improving) treatment needs to be continued with ciclosporin. Your doctors will determine when you can start tapering or reducing the dose of ciclosporin you take. The amount of ciclosporin you take will then be reduced very slowly over a period of many weeks to months. As the dose is reduced your blood counts will be closely monitored to ensure they remain stable. It is important that you do not stop taking ciclosporin suddenly or reduce the dose too quickly or too early. This is because it will increase the risk of aplastic anaemia coming back, which is known as a ‘relapse’. If low blood counts and disease symptoms return your doctor may increase or restart ciclosporin. For those who might experience side effects such as kidney toxicity, the drug may be discontinued and an alternative drug like Tracrolimus considered. If your blood count does not improve, your doctor will talk to you about having different treatment for your aplastic anaemia. What dose do I take? Your dosage is worked out according to your weight. When this amount has been worked out, it is divided into two doses – one for the morning, the other for the evening. By taking it twice a day, the levels of ciclosporin in your bloodstream will remain steady. The level of ciclosporin in your blood will be checked regularly, as well as other bio-chemical tests from your blood results that inform about your liver and kidney functions. Your dosage level may change depending on these results. Your ciclosporin levels can be affected by other drugs that you may need to take. But do not stop taking any prescribed medicines unless your doctor advises you to do so. What are the possible side effects? Ciclosporin has a number of possible side effects, which is why your blood counts will be regularly monitored. Because high levels of ciclosporin in your blood can increase the risk of side effects, you will be asked to take a lower dose if your level is found to be too high. Common side effects that you may get soon after starting ciclosporin include: Nausea (feeling sick), vomiting (being sick) and poor appetite, often within the first couple of weeks but then settling down Raised blood pressure – you may need to take medicine to control your blood pressure while taking ciclosporin Muscle cramps Burning sensation in your hands or feet Headaches Weight gain because your body retains fluid, an effect known as ‘oedema’ Increased hair growth, including facial hair Thickening of your gums Fine tremors (shaking) in your hands Abnormal kidney blood results Rare side effects include: Fits/seizures and confusion Numbness or pins and needles (neuropathy) An increase in your cholesterol levels An increase in your blood potassium levels A reduction in your blood magnesium levels Gout In men, gynaecomastia, which causes breasts to develop or some tender swelling in that area Very rarely, taking ciclosporin can lead to tumours such as lymphoma (a tumour of the lymph glands) but this is only a very slight risk. Are there any alternative treatments? Other drugs that are used to treat aplastic anaemia include ATG (ciclosporin is often combined with ATG treatment, but can also be given independently), anabolic steroids, campath and eltrombopag, but your doctor will discuss these with you. Can I take other medicines with ciclosporin? Many drugs interact with ciclosporin and you should always tell any doctor treating you that you are on treatment with ciclosporin. Do not take over-the counter/ nonprescription or herbal medicines without discussing this first with your doctor, nurse or pharmacist. However, many drugs can be taken safely with ciclosporin. Do I need any special checks while on ciclosporin? It is very important that your blood pressure is checked regularly. Your kidney and liver blood tests and ciclosporin blood levels also need to be monitored regularly, alongside monitoring of your blood counts. Is there anything I should avoid while taking ciclosporin? Grapefruit juice: This increases the amount of the drug in your blood as it helps your body to absorb it, leading to an increase in the risk of side effects. Lipid controlling drugs, especially statins: These can interact with ciclosporin and cause serious damage to your muscles as well as kidney failure Some herbal remedies, such as St John’s Wort: These can reduce the level of ciclosporin in your blood and may stop it from working properly Liquorice: This may weaken the drug’s effectiveness Can I have vaccinations while on ciclosporin? This is something you should discuss with your haematology consultant first. Do not have any ‘live’ vaccines such as shingles, polio, rubella (German measles) or yellow fever. Oral Hygiene Minimising the risk of infections One side effect of ciclosporin is the swelling and thickening of gums. The mouth harbours a lot of bugs even in good health and so keeping your mouth clean whilst you are taking ciclosporin is an important measure to help minimise your risk from infections. I have treated many people over my 30 years in Dental Practice who have experienced issues where medications such as Ciclosporin have caused unpleasant oral side effects with their gums. It’s useful to know that adopting simple measures from the start of treatment such as switching to soft or baby toothbrushes, brushing more frequently but gently, and using chlorhexidine antimicrobial mouthwashes such as Corsodyl really do work. It is a good idea to visit your dentist or hygienist for further preventative advice and helpful techniques on an ongoing basis. The good news is that the side effects are temporary in nature and will disappear when you no longer need to take Ciclosporin.- Fiona Cleaning your teeth Brushing your teeth regularly with a soft bristle toothbrush can help minimise the risk of gum disease and infections in the mouth. Your treatment team may also prescribe you an anti-microbial mouthwash to use in the form of chlorhexidine such as Corsodyl which is also available as a toothpaste. Make sure the mouthwash is alcohol free to avoid any further irritation or sensitivity of the gums. Staying positive It can be difficult receiving treatment for aplastic anaemia, and awaiting a response to treatment. Some of the side effects of ciclosporin. may be distressing or worrying. Being aware of possible body changes can help you prepare to deal with them. Some of the changes might affect the way you feel about yourself and your self-esteem. It is important to remember that you might not experience these side effects and that if you do, most of them are only temporary. Keep talking to your family and friends about how you feel as this will help. Discuss any side-effects you are experiencing with your medical team and how best to manage them. The Aplastic Anaemia Trust helpline is also available for anything you might want to talk about: 0300 102 3202 You can download the pdf here. You can order this information as a printed booklet from our shop, or download it as a pdf here Ciclosporin used as part of Anti-Thymocyte Globulin (ATG) treatment Manage Cookie Preferences