INFORMATION SHEET

Sirolimus (rapamune)

Why am I being prescribed sirolimus?

Sirolimus (trade name rapamune) is licensed to prevent rejection of organs after transplantation but it may be helpful in the treatment of certain types of inflammatory disease, including systemic lupus erythematosus (SLE). It reduces the activity of the body's immune system (the body's own defence system), so it is always used with care.

When and how do I take sirolimus?

Sirlimus is usually taken once a day at the same time. Do not crush or chew the tablets. They should be swallowed whole.. Grapefruit or grapefruit juice should not be consumed by anyone on sirolimus.

Your doctor will advise you about the correct dose. You will usually start on a low dose and gradually increase, according to the level in your blood.

How long does Sirolimus take to work?

It does not work immediately. It may be up to 3 months before you notice any benefit.

What are the possible risks or side-effects?

Adverse effects may include upset stomach or pain, drowsiness (if affected avoid driving or skilled tasks such as operating machinery), tremor, muscle or joint pain or rashes, weakness, headache, constipation, weight gain, difficulty with sleeping. Rarely, sirolimus may cause some inflammation in the lungs. Sirolimus may increase skin sensitivity to sunlight.

Sirolimus can also affect your liver and may increase blood pressure. It may affect your blood fats such as cholesterol and it can also affect your blood count (one of the effects is that fewer blood cells are made) and can make you more likely to develop infections. If you develop a sore throat or other infection, a fever, unexplained bruising or bleeding, jaundice, a cough or shortness of breath, or if you develop any other unexpected new symptoms after starting sirolimus, you should report to your doctor or rheumatology practitioner immediately. If any of these symptoms are severe, you should stop sirolimus and see your doctor immediately. There may be a slightly increased risk of certain types of cancer with sirolimus. Discuss this with your doctor. Because of the small increase in risk of skin cancer, you should avoid exposure to strong sunlight and protect your skin with sunblock or sunscreen.

If you have not previously had chickenpox, but come into contact with someone who has chickenpox or shingles, or if you develop chickenpox or shingles, you should stop tacrolimus and see your doctor immediately as you may need special treatment. This is because chickenpox and shingles can be severe in people on treatment such as tacrolimus which has effects on the immune system. Therefore you may require antiviral treatment.

Rarely, people may be allergic to sirolimus. If this is the case with you, the drug will have to be stopped. Symptoms of allergy include rash, wheezing, shortness of breath, and swelling of the face, lips, tongue or throat.

Do I need any special checks while on sirolimus?

Sirolimus can affect the blood count, liver function or electrolytes (salts). Occasionally, it may be associated with high blood pressure. You will therefore need the following special checks:

You may be asked to keep a record booklet with your blood test results. Bring this with you when you visit your general practitioner or the hospital. You must not take sirolimus unless you are having regular checks.

Can I take other medicines along with sirolimus?

Sirlimus may be prescribed along with other drugs in treating your condition. Some drugs interact with it so you should discuss any new medications with your doctor before starting them, and you should always tell any other doctor, nurse or dentist treating you that you are taking sirolimus and if you buy any ‘over the counter’ medicines without a prescription you should check with the pharmacist. In particular, you should not take St John’s wort.

Sirolimus is not a painkiller. So if you are on a non-steroidal anti-inflammatory drug (NSAID) or painkillers you may continue to take these as well, unless your doctor advises otherwise.

Can I have immunisations while on sirolimus?

It is recommended that you should not be immunised with 'live' vaccines such as yellow fever. However, in certain situations a live vaccine may be necessary (for example rubella immunisation in women of childbearing age), in which case your doctor will discuss the possible risks and benefits of the immunisation with you. Pneumovax and yearly flu vaccines are safe and recommended.

For more information about vaccines, please visit the website: http://www.cambridge-arthritis.org.uk/vaccines.php

May I drink alcohol while taking sirolimus?

If you drink alcohol you should only drink small amounts (e.g. 1 unit/per day) because sirolimus can affect your liver. Do not have several drinks on the same day, even if your total intake during the whole week remains low.

What if I am thinking of getting pregnant?

It is very important that you do not become pregnant and you must avoid breastfeeding whilst on sirolimus, so you must use adequate methods of contraception. If you are planning a family, you should discuss this with your doctor several months beforehand as you will need to stop sirolimus in advance.

Where can I obtain further information?

If you would like any further information about sirolimus, or if you have any concerns about your treatment, you should discuss this with your doctor, or telephone the Rheumatology advice line on 01223 217398. Remember to keep all medicines out of reach of children.

PLEASE NOTE: We have made every effort to ensure that the content of this information sheet is correct, but remember that information about drugs may change. This sheet does not list all the uses and side-effects associated with this drug. For full details please see the drug information leaflet which comes with your medicine. Your doctor will assess your medical circumstances and draw your attention to any information or side-effects which may be relevant in your particular case.

Sue Skingle August 2007

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