This information leaflet gives a brief description of the autoimmune disorder and a background about the use of Mycophenolate Mofetil (MMF) to treat autoimmune conditions. It is designed for patients who have been diagnosed with an autoimmune and been advised to take this medication to treat their condition.
What is Autoimmune Disorder?
A healthy immune system is your body’s defence against infection and disease. It produces a special type of protein called “antibodies” that destroys bacteria, parasites, viruses and cancer cells. However, for an unknown reason, your immune system can malfunction and mistakenly attacks healthy cells, tissues and organs, this is called “autoimmune disorder”. An autoimmune disorder happens when the body's natural defence system becomes confused and cannot tell the difference between your own cells and foreign cells, causing the body to attack your own body cells instead of protecting it. The symptoms of an autoimmune disease depend on which part of your body is affected. Symptoms include but are not limited to pain, swollen glands, tiredness, fatigue rashes, nausea and more.
There are no cures for autoimmune diseases but symptoms can be controlled and the disease may change with time. They may go into remission, where you have minimal or no symptoms, or they could flare up making the disease worse. Although they cannot be cured, treatments are generally focused on managing the symptoms. Many people with autoimmune diseases can live a normal life.
Treatments used to manage autoimmune diseases include painkillers, anti-inflammatories, medications for depression, anxiety and sleeplessness, insulin injections, corticosteroids, rash creams and pills, intravenous immunoglobulin (IVIg), plasma exchanges and drugs to suppress your immune system (immunosuppressants).
What is Mycophenolate (MMF)?
MMF is an oral medication which belongs to the group called “immunosuppressants”. The aim of this medicine is to control inflammation and put the disease into remission. It is more often used than steroids which have long term side effects, though it takes longer to work than steroids.
Mycophenolate reduces hyperactivity in your immune system. As a result, your body will not be as good as normal at fighting infections. This means you may catch more infections than usual. These include infections of the brain, skin, mouth, stomach and gut, lungs and urinary system.
How it is MMF given?
MMF is taken by mouth in the form of capsules (250 mg), tablets (500mg) or an oral suspension. It is taken with or soon after eating food. This should be swallowed whole as it is not safe to breathe the powder inside the capsules. Do not stop taking this medication unless you have been instructed to do so by your doctor. MMF will be started at a low dose and then increased depending upon your clinical response and your laboratory results. It can take up to four to six weeks to see a response to MMF.
Please observe the following advice when taking MMF:
- Swallow your capsules or tablets whole with a glass of water.
- Do not break or crush them
- Do not take any capsules that have broken or split open.
- Take care not to let any powder from inside a broken capsule get into your eyes or mouth. If this happens, rinse with plenty of plain water.
- Take care not to let any powder from inside a broken capsule get onto your skin. If this happens, wash the area thoroughly with soap and water.
What are the possible reactions / side effects?
Like all medicines, MMF also has side effects, although not everybody experiences them. If you notice any side effects, talk to your doctor, pharmacist or nurse. Most of these symptoms can be reduced by starting with a low dose of MMF and increasing the dose gradually over time or increasing the number of times the medication is given each day. You will be closely monitored in clinic while you are on immunosuppressants.
- Nausea, vomiting, abdominal pain and diarrhoea – Anti sickness tablets can be prescribed to manage this.
- Headache – the most common side effect reported but not experienced by every patient.
- Disturbance to your sense of taste.
- Reduced white blood cell count – leading to increased risk of infection. Tell your doctor or nurse straightaway when you have signs of an infection such as fever or a sore throat
- Hair thinning or loss.
- Effect on liver function – blood samples will need to be tested weekly for the first month to ensure there are no complications, then fortnightly for the next two months, then monthly until six months after starting the medication. Blood tests will then be carried out every three to six months once stable.
Do not take Mycophenolate Mofetil
If you are allergic to Mycophenolate Mofetil, mycophenolic acid or any of the other ingredients in this medicine. Tell your doctor immediately if you have swelling of your face, lips, tongue or throat, with difficulty breathing - you might be having a serious allergic reaction to the medicine (called anaphylaxis).
- If you could be pregnant, are planning to become pregnant or think you may be pregnant and you have not provided a negative pregnancy test before your first prescription, as mycophenolate causes birth defects and miscarriage. Your doctor may request more than one test to ensure you are not pregnant before starting treatment. You must use an effective method of contraception before you start taking Mycophenolate Mofetil, during your entire treatment and for six weeks after you stop taking the medication.
- If you are not using effective contraception talk to your doctor about the most suitable contraception for you. This will depend on your individual situation. Two forms of contraception are preferable as this will reduce the risk of an unintended pregnancy. Contact your doctor as soon as possible, if you think your contraception may not have been effective or if you have forgotten to take your contraceptive pill.
- If you are breast-feeding. This is because small amounts of the medicine can pass into the mother’s milk.
If you need to have a vaccine (a live vaccine) while taking Mycophenolate Mofetil, talk to your doctor or pharmacist first. Your doctor will advise you on what vaccines you can have.
If you have been prescribed Mycophenolate Mofetil to treat your autoimmune disorder and you have any concerns, contact your specialist team to review and advise you accordingly. You should discuss any questions you might have about this treatment with your doctor or specialist nurse so that you can make decisions together.
If this treatment is being supervised under the haematology team, you can contact them directly during office hours:
- Dr Martin Besser
- Dr Mark Robinson
- Dr Will Thomas
- Dr Emily Symington
Haematology specialist nurses
- Ruth Jolley
- Vivian Garcia
- Raessa Auturally (support nurse)
Telephone: 01223 256059 / 01223 274652
For out of hours help and specialist advice, you can also call the hospital switchboard on 01223 245151 and ask for the haematology registrar on call.
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Cambridge University Hospitals
NHS Foundation Trust
Hills Road, Cambridge
Telephone +44 (0)1223 245151