TL-01 phototherapy treatment. Information for patients Dermatology

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TL-01 phototherapy treatment Information for patients Dermatology

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What is TL-01 phototherapy? TL-01 phototherapy is a procedure which uses ultraviolet light to treat some skin conditions. It works by using UVB radiation (one of the wavelengths in sunlight) to target overactive immune cells in the skin. You have been prescribed a course of artificial sunlight treatment called TL-01. What are the benefits of receiving TL-01 phototherapy? Phototherapy treatment has been found to be helpful in treating many skin conditions, especially psoriasis, eczema and pruritus (itching). The best results are in psoriasis where 90% of the patients we treat can expect to be clear or nearly clear by the end of their course of light. The aim is to clear your skin or to improve control of your skin problem, but skin conditions such as psoriasis will nearly always return at some point after light therapy. Are there any limitations to the treatment? It is important to remember that your condition may not clear completely on TL-01. The treatment works well on the upper part of the body but may not clear skin problems below the knees. What other options do I have for treating my skin? This depends on your skin condition and how serious it is. Light treatment is usually suggested when your skin condition is not responding to creams or is too extensive to apply the creams. However, there are other treatments for most of the skin conditions that are treated with light therapy. You can discuss these with your dermatologist but most of them involve taking tablets that supress your immune system and have other side effects. page 3 of 12

You do not have to have treatment with light and it is up to you to decide how much your skin condition affects your life and whether you want to proceed with light therapy. It is rare for skin conditions to kill you but they can be extremely disabling. If you do not have the treatment it does not affect the long-term control of most skin conditions, as they often return anyway. However, it does help most patients with control of their skin during the months following treatment. What does the procedure involve? TL-01 treatment is supervised and administered by trained dermatology nurses in the Dermatology Department at the Royal Hallamshire Hospital. It is given as a course and can take anything from a few weeks to a few months to work. Each time you have a treatment, you will stand in a cabinet surrounded by fluorescent light tubes. The nurse programmes the machine to deliver a measured amount of light. The amount of light that you receive on your first visit will depend on how fair-skinned you are. Before your treatment course, a test known as minimal erythema dose testing (MED) is performed on most patients. The time you spend in the cabinet will be different each time you come. Usually the dose of light increases at every visit. However, the machine may take a longer or a shorter time to deliver that dose. This is because the tubes may be starting at a different temperature to when you last had your treatment. Usually treatments are given 3 times a week. Sometimes they are given twice a week. There should be at least a day's break between treatments. TL-01 will often work better if it is used alongside creams or ointments prescribed by your dermatologist. page 4 of 12

About minimal erythema dose testing What is minimal erythema dose testing? Minimal erythema dose (MED) testing is a skin test done before your light treatment begins. A small area of skin is tested to different doses of ultraviolet B light at the same time. This is to find the lowest dose of light that would cause your skin to redden (erythema). Why is it done? It is done so we can work out the best dose for you to start your treatment on. This prevents us starting you on too high a dose which might burn you, or too low a dose which would take longer to work. How long will it take? You will be given two appointments; one to carry out the test and one for the next day to see the result. The first appointment should last about thirty minutes but the second one is much quicker. How will it be done? You will need to expose a small area of skin on your back. We will ask you to lie face down on a couch. We will give you a pair of goggles to wear to protect your eyes. A piece of rubber with small holes is attached to the area to be tested. Any other exposed skin will be covered with a protective sheet. A set of light tubes is placed over you, as though you were on a sun bed. The different doses are then given, which should only take a few minutes. page 5 of 12

What happens after the test? When the test is over, we will mark the area with a permanent marker pen. This could stain your clothing so it is advisable to wear something old or dark. You need to keep your back dry until you have been seen again. The next day we will look at the area and then work out the right starting dose for your light treatment. We can then give you your first dose of light on the same day. Occasionally your treatment may be put off until a later date. About TL-01 treatment What are the risks and side effects of TL-01? The aim of TL-01 treatment is to maximise the benefits to your skin, whilst minimising any harmful effects on your skin and eyes. Most patients have no side effects whatsoever. However, problems that may occur whilst you are on treatment are: Sunburn-like reactions Everyone's skin is different. We try to give a dose of light that is tailored to your type of skin, but it is never possible to predict exactly how your skin will react. 42% percent of patients having TL-01 will experience some mild redness. Two to three patients a year will develop a painful red burnt area somewhere on their body. If burning does occur, it should settle within a few days. We may suggest moisturisers or mild steroid creams to help it settle. We would then reduce the dose of UVB light that you receive, or stop treatment. If the sunburn is painful, telephone us on 0114 271 3670 between 8.00am and 4.30pm. Outside these hours you may have to contact your GP. Eye damage We have never had patients developing eye damage but your eyes could become very sore if you do not use the goggles we provide. You must wear the goggles in the machine. page 6 of 12

Dry skin Most patients on light treatment have dry skin anyway. Use plenty of the moisturiser that has been recommended for you. Itching / prickling sensation A few patients may develop this. Again, use plenty of moisturiser. If your skin becomes too uncomfortable, we can always stop treatment. Re-activation of cold sores If your face doesn't need light treatment, we can screen your face with a visor to prevent cold sores flaring up. We usually try to screen the face anyway. Skin cancer TL-01 has been in widespread use for nearly 20 years. There have been no reports of increased rates of skin cancer after TL-01 to date. However we feel that long and repeated courses of TL-01 may lead to an increased risk of developing skin cancer. The risk would increase with the number of treatments given. For this reason, the number of treatments you have will be limited to 150-200 individual sessions in the cabinet. Premature skin ageing The risk is initially very small but increases with a large number of treatments. Pregnancy This form of light treatment has been safely used during pregnancy and there is no evidence that it is harmful. However, you may wish to avoid treatment in the first 3 months of pregnancy. page 7 of 12

Practical points whilst receiving treatment You must protect your eyes whilst you are having treatment in the light cubicle. Make sure that you always wear the goggles we provide whilst you are in the machine. Your face is exposed to natural light throughout your life. Thus, skin cancers are more likely to develop in that area anyway. To avoid any possibility of increasing this risk, you may be asked to wear a visor to protect your face whilst you are in the light cubicle. If your face is affected by your skin condition, you may not need to wear the visor for the first few treatments. Please ask. Women should not wear any clothing whilst in the machine. Men should wear a double layer of dark underwear to cover the genitals, as otherwise there is a small risk of developing skin cancer in that area. The underwear should always be of the same type and in the same position, to prevent burning. If the buttocks are affected by your skin condition, do not pull your underpants down whilst you are in the machine. Thong pants can be helpful in this situation. However, you must wear them from your first treatment to prevent burning. Remember to always expose the same skin to the light. Do not wear jewellery in the machine as it may move. Do not cut your hair or alter your hairstyle, as you may burn in the newly exposed skin area. You must not wear aftershave or perfume whilst in the machine as it may react with the light and cause burning. Some medicines can make you more sensitive to the treatment. Please let us know about any new medicines that you take during the course of treatment, including over-the-counter medicines. Some foods can make you more sensitive to the treatment e.g. wild carrots, celery, fennel, figs or parsnips. These are probably only a problem if consumed in large quantities e.g. a bowl of celery soup. There are other foods such as parsley, but these are unlikely to be eaten in large quantities. page 8 of 12

Only use those moisturising creams recommended e.g. Diprobase cream or E45 cream. Other moisturisers may prevent your treatment working. Never apply moisturisers within the 2 hours prior to having treatment, for the same reason. Do not sunbathe or use a sunbed at any time during your course of treatment, otherwise you may burn. Protect your skin from natural sunlight whilst outdoors (e.g. gardening) by wearing a long sleeved shirt, a broad-brimmed hat and a strong sunblock. Is there anything I should look out for? Most patients do not experience any side effects following treatment. However in a small minority there is a risk of burning. If this does occur, it should settle within a few days. If the sunburn is painful please contact us on the number below during normal office hours. Outside this time you may have to contact your GP. Who do I contact if I have any concerns? If you have any questions or concerns about your treatment you can contact the Phototherapy Unit in the Dermatology Department as follows: Nurse-led Phototherapy Unit Dermatology Department Royal Hallamshire Hospital Sheffield Teaching Hospitals NHS Foundation Trust 0114 271 3670 8.00am - 4.30pm page 9 of 12

Important notice about attendance: The treatment requires commitment on your part as it is given as a course. It will not work if you fail to attend appointments! If you are unable to attend for treatment, please ring the light unit on: 0114 271 3670 as soon as possible between 8.00am and 4.30pm, to discuss your appointment. If you are finding it difficult to attend on a regular basis, we will give your treatment time to another patient and discharge you from the light unit. If you fail to attend for treatment on more than two occasions without telephoning to discuss this, we will give your treatment time to another patient and discharge you from the light unit. For children, please note: All children under the age of 13 must be accompanied by a responsible adult throughout the course of their treatment. Children aged between 13 and 16 must be accompanied by a responsible adult for MED testing prior to the commencement of treatment, and for at least the first 3 consecutive treatments. Any cancellation of appointments should be made by a responsible adult. page 10 of 12

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Produced with support from Sheffield Hospitals Charity Working hard to fund improvements that make life better for patients and their families Please donate to help us do more www.sheffieldhospitalscharity.org.uk Registered Charity No 1059043 Alternative formats may be available on request. Please email: alternativeformats@sth.nhs.uk Sheffield Teaching Hospitals NHS Foundation Trust 2016 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.1515. Information on re-use can be obtained from the Information Governance Department, Sheffield Teaching Hospitals. Email infogov@sth.nhs.uk PD4699-PIL555 v4 Issue Date: April 2016. Review Date: April 2018