Everolimus. Information for patients Sheffield Kidney Institute (Renal Unit)

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1 Everolimus Information for patients Sheffield Kidney Institute (Renal Unit)

2 Everolimus for angiomyolipomas in tuberous sclerosis What is tuberous sclerosis? Tuberous sclerosis is a rare condition caused by a faulty gene. In around three in every four cases, the genetic fault happens for no apparent reason in people without any other affected family members. In the remaining one in four cases, the fault is passed on to a child by their parents. Only one parent needs to carry the faulty gene to pass it on. A parent who has one of the faulty genes has a one in two chance of passing it on to each child they have. The parent carrying the faulty gene will also have tuberous sclerosis, although sometimes it may be so mild that they don't realise it. Tuberous sclerosis, causes mainly non-cancerous (benign) tumours (growths) to develop in different parts of the body. The tumours most often affect the brain, skin, kidneys, heart, eyes and lungs. Tuberous sclerosis is present from birth, although it may not cause obvious problems straight away. It's estimated that around 1 in every 6,000 babies are born with the condition. What are angiomyolipomas? Angiomyolipomas are benign (non-cancerous) growths that occur in the kidney in up to 80% of patients with tuberous sclerosis. The growths mainly cause problems through bleeding around the kidneys. The bigger the growths, the more likely they are to bleed. page 2 of 8

3 Stopping the bleeding sometimes requires a procedure or an operation to block the blood flow to the affected area. As angiomyolipomas get bigger, they can reduce kidney function by pressing on the surrounding normal kidney tissue. How do I know if I have angiomyolipomas? You will have had CT or MRI scans and these will have shown the growths in the kidneys. You may have also had other tests and investigations to look for signs of the condition. You may also be asked about your family history of health problems. From these, your doctor will have diagnosed your tuberous sclerosis. What is the treatment for tuberous sclerosis? Tuberous sclerosis is a lifelong condition and there is no cure. You will need long-term care and support from a number of different healthcare professionals. Regular testing is important for people with tuberous sclerosis. This is so that the function of the parts of the body often affected by the condition, in your case the kidneys, can be regularly monitored and assessed. Everolimus may be used to stop tumours becoming too large, as large tumours can cause dangerous bleeding. page 3 of 8

4 What is everolimus (Votubia )? Everolimus is a tablet that can reduce the size of angiomyolipomas (growths). If you have angiomyolipomas that are at least 3cm in size your doctor will recommend you have this treatment. The aim of this treatment is to reduce the size of the growths and so reduce the risk of bleeding. You will need scans at regular intervals to monitor size of the angiomyolipomas and to check for any new growths. How do I take everolimus? Everolimus is a tablet that is taken once every day. It is important that you take the tablet at about the same time each day. How long do I need to take everolimus for? You need to take everolimus long term to stop angiomyolipomas growing. After you have had 6 months of treatment your kidneys will be re-scanned to see whether the angiomyolipomas have grown. If the scan shows that the angiomyolipomas have grown, or you have still had bleeding whilst taking everolimus, the treatment will be stopped as it is not working for you. page 4 of 8

5 What if I miss a dose? If you miss a dose you should not take extra tablets to make up for this. Just take the next dose as usual. What are the side effects of everolimus? The most common side effects that can occur with everolimus are: Sore mouth (stomatitis) Acne-like rash Sore throat and runny nose Headache Diarrhoea Cough Slower wound healing; if you need an operation then everolimus should be stopped Other possible side effects are monitored with blood and urine tests: Increased blood cholesterol or glucose levels Reduced white blood cells or platelets Abnormal liver function blood tests Increased protein in the urine Everolimus suppresses (dampens) the immune system so it doesn t work as well. This may mean you get more frequent or severe infections. If you become unwell with a fever whilst taking everolimus you should contact us straight away. We explain how to do this at the end of the leaflet. page 5 of 8

6 Does everolimus interact with other tablets? Some other tablets interfere with everolimus, increasing or decreasing its effects. If any healthcare professional wants to start you on any new medication, you must tell them that you are also taking everolimus. If they want advice they can contact the renal unit for help. Can I take everolimus if I am pregnant or breastfeeding? Everolimus must not be taken while you are pregnant or breastfeeding. If it is possible you could become pregnant, you must use effective contraception (birth control) while you take everolimus and for 8 weeks after stopping treatment. Do I need to attend regular hospital appointments? Yes. It is important that your blood and urine are checked for any possible side effects. Your kidney doctor will tell you how often. Can I have vaccines? You should not have live vaccines (such as typhoid, polio, rubella, BCG, chicken pox, shingles) whilst taking everolimus. It is safe to have the pneumococcal and flu vaccines. If your GP or practice nurse is not sure if you can have a vaccine, they can contact the renal unit for advice. page 6 of 8

7 Where can I find out more information? More information on tuberous sclerosis is available on the following websites: Use the space below to write down any questions you have for the doctors when you come to clinic. page 7 of 8

8 If you have any urgent questions or concerns please contact: Renal Assessment Unit Monday to Thursday: 8.30am pm Friday: 8.30am pm In an emergency outside of these hours: Renal F Floor or For general information call: Janet McCormick, Renal Nurse Specialist, Sorby Renal Outpatients Monday to Thursday: 8.30am pm Produced with support from Sheffield Hospitals Charity Working together we can help local patients feel even better To donate visit Registered Charity No Alternative formats can be available on request. Please alternativeformats@sth.nhs.uk Sheffield Teaching Hospitals NHS Foundation Trust 2017 Re-use of all or any part of this document is governed by copyright and the Re-use of Public Sector Information Regulations 2005 SI 2005 No Information on re-use can be obtained from the Information Governance Department, Sheffield Teaching Hospitals. infogov@sth.nhs.uk PD9451-PIL4009 v1 Issue Date: December Review Date: December 2019