Subacute cutaneous lupus erythematosus

Transcription

1 Subacute cutaneous lupus erythematosus Barnes Building Photobiology Unit All Rights Reserved Document for issue as handout.

2 This guide has been written to help answer some of your questions about subacute cutaneous lupus erythematosus. You may have been given this guide because you have been diagnosed with subacute cutaneous lupus erythematosus or because we think this might be the cause of your symptoms. What is subacute cutaneous lupus erythematosus? Lupus erythematosus (pronounced loo-pus er-eethem-a-toe-sus and sometimes called just lupus or LE) is a name used to describe a whole range of conditions. These range from systemic LE that can affect internal organs to subacute cutaneous LE that only affects the skin. Subacute cutaneous lupus erythematosus (pronounced sub-a-cute kew-tane-ee-us loo-pus er-ee-them-a-toe-sus and sometimes shortened to SCLE) is an uncommon skin rash that is made worse by sunlight. The subacute part of the name means a condition which doesn t stay there all the time but also doesn t disappear really quickly. The cutaneous part of the name means affecting the skin and erythematosus describes the red colour of the rash. Patients with SCLE are usually affected between spring and autumn. The rash usually looks red and can be scaly. It appears mainly on the sun exposed areas of the upper body. As the rash heals you may be left with a purple or greyish mark for a while. Who develops SCLE? Both men and women can get SCLE, but it is more common in younger women. 1

3 What causes SCLE? Is it infectious? What about vitamin D? Evidence suggests SCLE is due to the body s immune system over reacting to the effects of sunlight on the skin. Occasionally SCLE can be caused particular medicines. We will check the medicines you are taking and if we think that your SCLE may be caused by one of your medicines we will write to your consultant or GP so that they can find an alternative for you. You should never stop taking any medicines until you have discussed this with your consultant or GP. Is SCLE serious? In most cases SCLE remains restricted to the skin and does not usually cause general illness or shorten your lifespan. However, a small number of patients may go on to develop a more generalised condition called systemic lupus erythematosus (SLE). No there is no risk of other people catching the condition from you. Can SCLE be cured? No, most patients are affected every year but do manage quite well once they understand their condition and how to control it. How will having SCLE affect me? If you have been diagnosed as having SCLE you may have to make changes to your lifestyle which can be restrictive. You should try to: Avoid the sun between 11am and 3pm Wear protective clothing Use a sunscreen that is SPF 30 or above (UVB protection) and has four/five stars (UVA protection). Remember to reapply the sunscreen often Learn how much sunlight your skin can tolerate and keep within that limit Importantly, in order for people to make enough Vitamin D themselves, they need a certain amount of sun exposure. The sun protection measures needed for people with SCLE mean Vitamin D deficiency is a real risk and this does require treatment with supplements if it occurs. Once again, this can be monitored through blood tests. How can SCLE be treated? Sunscreens You will be provided with sunscreens on prescription and these will help prevent the rash developing. Sunscreen should be applied as thickly and evenly as possible and re-applied often. Topical creams Your doctor may prescribe corticosteroid creams or ointments to put on your skin in the evening if the rash appears. Steroid creams can be strong and should only be applied sparingly and while the rash is there. You should stop applying steroid cream when the rash has gone. Anti-malarial drugs SCLE is not due to malaria, but experts have found that antimalarial drugs can sometimes help to treat SCLE. This is because anti-malarial drugs also have anti-inflammatory properties. You may be prescribed hydroxychloroquine (plaquenil) which you will need to take through the summer months. The treatment is usually stopped over the winter. As with all medicines hydroxychloroquine can have side effects including affecting the nerves in the eye. Before you start treatment with anti-malarial medicines you will need to have your eyes checked and blood tests. When you are taking the tablets you will need to stop straightaway if you notice you are having any visual disturbances - this is very important. 2 3

4 Contact us The Photobiology Unit can be contacted on: or by nhs.uk Support group We run a support group for all patients with photosensitivity disorders such as subacute cutaneous lupus erythematosus. If you are interested in finding out more please contact us at the above address. Further information The British Association of Dermatologists produces a series of patient information leaflets. They can be contacted at: The British Association of Dermatologists, 4 Fitzroy Square, London or if you have access to the internet on their web site: Lupus UK is a charity for people who have systemic (whole body) lupus (SLE) but they also provide support for people with SCLE. They can be contacted at: Lupus UK St James House, Eastern Road Romford, Essex, RM1 3NH England (Monday-Friday, 9am-5pm) headoffice@lupusuk.org.uk Notes 4 5

5 G W. Design Services Salford Royal NHS Foundation Trust All Rights Reserved 2017 This document MUST NOT be photocopied Information Leaflet Control Policy: Unique Identifier: CS93(16) Review Date: February 2019 For further information on this leaflet, it s references and sources used, please contact Copies of this information are available in other languages and formats upon request. If you need this interpreting please telephone In accordance with the Equality Act we will make reasonable adjustments to enable individuals with disabilities, to access this treatment / service. InterpretationandTrans@srft.nhs.uk Under the Human Tissue Act 2004, consent will not be required from living patients from whom tissue has been taken for diagnosis or testing to use any left over tissue for the following purposes: clinical audit, education or training relating to human health, performance assessment, public health monitoring and quality assurance. If you object to your tissue being used for any of the above purposes, please inform a member of staff immediately. Salford Royal operates a smoke-free policy. For advice on stopping smoking contact the Hospital Specialist Stop Smoking Service on Salford Royal NHS Foundation Trust Stott Lane, Salford, Manchester, M6 8HD Telephone If you would like to become a Foundation Trust Member please visit: for-members If you have any suggestions as to how this document could be improved in the future then please visit: for-patients