Sarcoidosis. Exceptional healthcare, personally delivered

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1 Sarcoidosis Exceptional healthcare, personally delivered

2 The Bristol Interstitial Lung Disease Service at North Bristol NHS Trust cares for a catchment area of around 550,000 people (plus additional referrals from other centres), with a variety of interstitial lung diseases including Idiopathic Pulmonary Fibrosis (IPF), Hypersensitivity Pneumonitis (HP), Sarcoidosis, and pulmonary fibrosis related to auto-immune conditions such as Rheumatoid arthritis, SLE, systemic sclerosis, Sjogren s syndrome, and also pulmonary fibrosis due to other causes. Our team includes of 2 consultant respiratory physicians with a specialist interest in interstitial lung disease, a specialist nurse and pharmacist, a clinical trials nurse and lung function technicians. Our specialist clinics are held twice weekly in G ward out-patient department. You may have been given an appointment time for your lung function and walk tests prior to seeing the doctor. These results help with monitoring your condition. You may also require some blood tests, or to see the nurse or pharmacist, so please allow additional time should this be needed. If for any reason you need to change your appointment, please contact the relevant secretary below, thank you. 2 Sarcoidosis

3 The team: Professor Ann Millar: Consultant in Respiratory Medicine Secretary: Elaine Musgrove Tel: Fax: Dr Huzaifa Adamali: Consultant in Respiratory Medicine Secretary: Rachel Cook Tel: Fax: Heather Lamb: Pulmonary Fibrosis (ILD) Nurse Specialist Tel: / Pager Lloyd Mayers: ILD / Respiratory Pharmacist Tel: / Bleep 1549 Deborah Warbrick: Senior Clinical Trials Research Nurse Tel: Lung Function Department (breathing and walk testing) Appointments: Sarcoidosis 3

4 What is sarcoidosis? Sarcoidosis (also known as sarcoid) is a disease caused by small areas of inflammation. Scientists believe sarcoidosis is an immune system disease brought on by failure of the body s natural defence system. It can affect any part of the body but 90% of cases affect the lungs. The lungs can become stiff and may not be able to hold as much air as healthy lungs. It can affect the air sacs, breathing tubes or lymph nodes. In serious cases it can cause scar tissue to develop in the lungs and this reduces the ability of the lungs to move oxygen into the bloodstream. What causes sarcoidosis? We do not know the cause of sarcoidosis but it probably results from something in the environment causing the disease in a patient who is susceptible, probably as a result of their genetic make-up. Although sarcoidosis is not hereditary and cannot be passed on to children, in a small number of cases other family members are occasionally affected. The disease affects all races and ages but is most commonly found in those between years of age but it can affect people older than 60. It is four times more common in people of African descent than Europeans. Acute sarcoidosis: Sarcoidosis may flare up rapidly causing enlarged lymph glands deep inside the chest, a tender skin rash on the legs, fevers, malaise, and often joint pains. In the majority of cases this form of sarcoidosis settles down without treatment. Chronic sarcoidosis: Sarcoidosis causing progressive scarring (fibrosis) of the lungs, chronic skin rashes and can affect other organs including the heart and the brain. Patients with this type of sarcoidosis generally have more symptoms requiring treatment and will often require longer follow-up than those with acute sarcoidosis. 4 Sarcoidosis

5 What are the symptoms of sarcoidosis? Sarcoidosis most commonly affects the lungs and skin, but it can affect almost any organ and can vary from person to person, therefore a large range of symptoms are possible. In some cases sarcoidosis does not give rise to symptoms and you may have been unaware that you have it, only coming to light when tests such as chest X-rays are performed for other reasons. Many patients with sarcoidosis experience fatigue or tiredness, weight loss and fever. Respiratory (lung) symptoms Sarcoidosis commonly affects the lungs but may not cause any symptoms. If symptoms do occur, the common ones are dry cough, breathlessness and sometimes a discomfort in the centre of the chest although this is rare. Lymph glands Lymph glands are structures that normally help fight infections and are commonly affected in sarcoidosis resulting in swollen glands. This often occurs in the neck and may be the first symptom of sarcoidosis. Skin Sarcoidosis can affect the skin in many ways. A purple bruise-like rash on the front of the shins (called erythema nodosum) may appear at the start of sarcoidosis and is often associated with feeling unwell and temperatures. Sarcoidosis can also cause small bumps (nodules or papules) anywhere on the skin or just under the surface of the skin. It may also cause a raised rash on your nose and cheeks. Other symptoms Sarcoidosis can affect almost any part of your body and can affect more than one part at the same time. The eyes can be affected causing them to be red and sore. If you notice changes in your vision it is important you are followed up Sarcoidosis 5

6 by an eye specialist. Bones and joints may become inflamed and sore, most commonly your knees and ankles. Sarcoidosis can affect kidney function if calcium levels increase, and this can be monitored by a blood test measuring the level of calcium, urea and creatinine in the blood. Sarcoidosis can also cause kidney stones. You will also be asked to perform a 24 hour urine collection where calcium levels will be checked in the urine. It can also affect other parts of the body, including the muscles, nervous system, the liver, spleen and gut. How is sarcoidosis diagnosed? Sarcoidosis is diagnosed in different ways, according to which organ is affected. In many cases tissue from the affected organ is taken (a biopsy) to confirm the diagnosis. If your lungs are thought to be affected a bronchoscopy is usually performed, where a small flexible tube is passed down into your lungs, allowing a biopsy to be taken. A biopsy may be taken from other areas if sarcoidosis is suspected, eg lymph glands, skin. The inflammation of sarcoidosis has a typical appearance when it is examined under the microscope. A Specialist may suggest a CT scan to allow a more detailed look at your lungs. You may also have some lung function (breathing tests) to look at how well your lungs are working. This can help with monitoring your condition to see whether you are responding to treatment. You may be referred for an echocardiogram which is an ultrasound of your heart. This can show if your heart is enlarged or affected by sarcoidosis. You may be referred to an eye specialist. If the eyes are involved it can affect your vision. 6 Sarcoidosis

7 How is sarcoidosis treated? Acute sarcoidosis goes away without treatment in up to 90% of cases. Simple painkillers are generally the only treatment you need. Chronic sarcoidosis is more difficult to treat and although it may go away without treatment, this is less likely. The main treatment is usually with steroid tablets to help reduce inflammation. If your sarcoidosis goes away, your treatment may be gradually stopped. If steroids are ineffective, then there are other drugs that can be used. These are known as immunosuppressive or cytotoxic medication which work by suppressing, or dampening down the body s immune system. These include drugs such as hydroxychloroquine and methotrexate and can help reduce the amount of steroid you take. You may require regular blood tests while you are taking some of these drugs to ensure that they are not causing any problems with the liver kidney function or reducing your white cells (which are an important part of the immune system). All medications have side effects and your specialist will discuss them in detail with you. If your sarcoidosis is severe and has caused fibrosis (scarring), you may benefit from oxygen therapy. Rarely lung transplantation might be considered. Long term treatment You will probably be referred to a chest specialist, and possibly other specialists depending upon which part of your body is affected. If you have chronic sarcoidosis you may be followed up for several years. In many people the disease can go away, but scarring of the lungs, skin or other organs may remain. Once your treatment is stopped your specialist may still wish to see you in clinic to ensure the disease does not come back. Sarcoidosis 7

8 References British Thoracic Society, September 2008 Thorax 2008; 63, supplement V NHS Constitution. Information on your rights and responsibilities. Available at [Last Accessed November 2012] 8 Sarcoidosis

9 How to contact us: ILD team C Ward office Southmead Mon-Fri If you or the individual you are caring for need support reading this leaflet please ask a member of staff for advice. North Bristol NHS Trust. First Published November Review due November NBT002701

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