INTRODUCTION THE SPINE WHAT HAPPENS

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1 INTRODUCTION Ankylosing spondylitis or AS, is a form of arthritis that affects the spine, and can also affect other joints. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort with stiffness. This booklet aims to tell you something about the condition and how it may affect your health and activity. It also deals with how to look after yourself, different forms of treatment, and gives advice about posture, exercise, occupation and inheritance. THE SPINE The backbone, or spine is made up of 24 bones (vertebrae) and 110 joints. The three main sections, cervical, thoracic and lumber, differ in their shape and curve. The cervical (neck) section is most mobile. In the thoracic (chest) section, each vertebra has a rib attached by joints on each side. Below the lumbar (lower back)section is the sacrum which sits like a keystone in the ring at the sacroiliac joints which lie between the sacrum and the pelvis. WHAT HAPPENS Spondylitis means inflammation in the joints of the spine, and comes from the Greek word for vertebra (Spondylos). Over time, the body tries to heal this inflammation by forming new bone between the vertebrae. This bone can build up and fuse the vertebrae together, which straightens the spine and makes it less flexible. AS commonly occurs in younger people, between the ages of However, it can affect children and those who are much older. AS is more common in men, but occurs in women as well.

2 WHAT CAUSES AS? The cause is not known. AS is not infectious or contagious, and is not caused by athletic activity or injury. Occasionally more than one member of a family may get AS because of a hereditary factor, a gene called HLA-B27. This marker is found in over 95% of Europeans with AS - but much lower in the South African population. It is important to note, however, that you do not have to be HLA-B27 positive to have AS. Also, majority of the people who are HLA-B27 positive never develop AS. It is suspected that other genes, along with a triggering environmental factor, such as a bacterial infection, are needed to trigger AS. WHAT ARE THE SYMPTOMS? Back Pain and stiffness Symptoms usually start in early adulthood. Lower backache and stiffness are the main symptoms, and tend to be worse first thing in the morning, improving as the day goes on. Exercise, movement or a hot shower usually help pain and stiffness. Rest does not make it better - lying in bed is often uncomfortable, and many patients find backache disturbs sleep. The pain may be felt in the buttocks, possibly down the back of the thighs. General symptoms Some people with AS feel generally unwell with tiredness, depression or weight loss. Other joints Sometimes, either earlier or later, AS may affect joints other than the spine. The hips, knees, ankles and shoulders may be involved. The small joints of the hands and feet can be attacked, but usually only in a few places. You may experience a period of aching in the joints in question, perhaps with some swelling. It is very important that your hips must not be allowed to stiffen in a bent position as this can lead to damage in the knees, and cause more backache. Inflammation of tendons and ligaments Tendons and ligaments in various parts of the body (in addition to those attached to the vertebrae of the lower spine) may become inflamed and painful where they attach to bones. Common examples are the Achilles tendon where it attaches to the heel, and where chest muscles attach to the ribs. Inflammation of part of the eye (uveitis) This affects about 1 in 3 people with AS. See your doctor urgently if you develop a painful red eye. If you develop uveitis, treatment with eye drops should be started as soon as possible after eye symptoms begin. Treatment of uveitis is usually successful. However, if not treated quickly there can be permanent loss of vision in the eye. Other trouble spots

3 Other rare complications, affecting less than one patient in a hundred, may occur. These include the heart, lung and nervous system, but treatment is available for all of them. Colitis, or inflammation of the bowel, is associated with AS in some patients, as is a skin condition called psoriasis. Advanced Symptoms In the most advanced cases (but not in all cases), inflammation leads to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture. This forward curvature of the spine is called kyphosis. ASSOCIATED DISEASES It is clear that AS is one of a group of diseases called the spondyloarthropathies. Other examples include psoriatic arthritis, inflammatory bowel disease associated arthritis and reactive arthritis. Most people with AS do not get these conditions - it is just that they are more common in people with AS than would be expected in the general population. HOW IS AS DIAGNOSED? An MRI scan of the sacroiliac joints confirms the diagnosis at an early stage. An MRI scan can give a much more detailed view of a joint than a traditional X- ray picture and can detect inflammation in the sacroiliac joints and spine. As the disease progresses, typical changes develop on X- ray of the sacroiliac joints and spine. The X-ray pictures show the bones gradually fusing together. However, these changes may take several years to become bad enough to be seen on X-ray pictures. IS THERE A CURE? Currently, there is no known cure for AS, but there are treatments and medications available to reduce symptoms and manage the pain.. THE OUTLOOK The severity of AS varies greatly from person to person, and not everyone will experience the most serious complications or have spinal fusion. Some will experience mild back pain and discomfort only from time to time. Others will experience severe pain and stiffness over multiple areas of the body for long periods of time. AS can be very debilitating, and in some cases, lead to disability. Almost all cases of AS are characterized by acute, painful episodes (also known as "flares") followed by temporary periods of remission where symptoms subside. It is important to know that ankylosing spondylitis is a chronic, or lifelong disease and that the severity of AS has nothing to do with age or gender. It can be just as severe in women and children as it is in men.

4 Remember that even if you have AS and are experiencing only mild symptoms, which you are able to manage quite well, it is important to see your rheumatologist once a year in order to detect and treat any underlying complications. TREATMENT A comprehensive treatment regimen for AS involves medication, exercise and physical therapy, good posture practices, and other treatment options such as applying heat/cold to help relax muscles and reduce joint pain. In severe cases of ankylosing spondylitis, surgery may also be an option. The aims of treatment are: to ease pain and stiffness, to keep your spine as mobile and flexible as possible, and to limit the extent of any deformity. Exercise Exercise in an important part of AS. Regular exercise can help create better posture and flexibility as well as help lessen pain. Swimming is one of the best excercises, and many patients enjoy A properly trained physical therapist with experience in helping those with ankylosing spondylitis can be a valuable guide in regard to exercise. Exercises should become a routine part of life. Ideally, they should be done daily. Think Tall Keeping as straight and erect as possible will help avoid some of the complications of spondylitis like stiffness and flexion deformities / kyphosis (downward curvature) of the spine. Hold your head in a balanced manner over the trunk in a sitting or standing position. The chin should be horizontal and parallel to the floor, drawn back slightly and centered. Try to stand, walk and sit "tall" at all times. Hardback, upright chairs or straightback rocking chairs are far better for your back posture than low, soft, upholstered chairs. Pay special attention to the position of your back when at work, so that you do not have to stoop. If you sit at a desk or bench, see that your seat is at the proper height and do not sit in one position for too long without moving your back. A job which allows sitting, standing, and walking is ideal. The most unsuitable work is one in which you have to stoop over a bench for hours at a time.

5 Medication NSAIDs (nonsteroidal anti-inflammatory drugs) are very effective for treating the pain and stiffness of AS. New studies show that taking NSAIDs every day may slow down the progression of AS. NSAIDs can cause side effects, like stomach ulcers, high blood pressure and kidney problems, so your doctor will need to monitor you regularly. Ordinary painkillers paracetamol in addition to an anti-inflammatory medicine for top-up pain relief can be helpful. Immunosuppressants-When NSAIDs are not enough, the next stage of medications, (also known as second line medications), are sometimes including Sulfasalazine and Methotrexate. Corticosteroid injections into a swollen joint are sometimes used to ease symptoms. Biologic treatment- anti-tnf Blockers. These drugs have been shown to be highly effective in treating AS. They can only be prescribed by a rheumatologist and are given as an injection under your skin, which you can learn to give yourself, or as an intravenous infusion every month. Biological therapies aren t suitable for everyone and can only be prescribed if your condition can t be controlled with antiinflammatory drugs and physiotherapy. Included in this group are Enbrel, Remicade, Humira and Simponi. Heat in its various forms will help to relieve pain and stiffness. A hot bath before going to bed, a hot water bottle or electric blanket may be sometimes useful. Surgery Most people with ankylosing spondylitis don t need surgery, although some may need a hip or knee replacement if these joints are badly affected. This can get rid of pain and improve mobility. Surgery to straighten a bent spine is very rare and isn t usually recommended. AS AND CARDIOVASCULAR DISEASE

6 If you have AS, you have an increased risk of narrowing of the arteries by a fatty substance called atheroma. This may eventually lead to conditions such as heart attack, angina or stroke.therefore, you should consider doing what you can, to reduce the risk of cardiovascular disease by other means. For example: Eat a good healthy diet, exercise regularly, loose weight if you are overweight, and do not smoke. If you have high blood pressure, diabetes, or a high cholesterol level, they should be well controlled on treatment. EXERCISE PROGRAMME

7 An exercise program will help you maintain good posture, flexibility and eventually help to lessen pain. 1. Back Against the Wall Within view of a full-size mirror, stand against a wall to check your posture. Place your heels, buttocks and shoulders as close to the wall as possible- even touching lightly. Don't strain. Push your head back towards the wall. Hold for five seconds, relax, and do it again. Repeat 10 times. 2. Twists 3. Lying on your back 4. Prone Lying Lie face down on a firm surface, such as the floor or a firm bed. If unable to lie flat in this position, place a pillow under your chest and a folded towel under your forehead. Start slowly; maybe you can only accomplish prone lying at first for a minute or two. It's often helpful to do this posture training after a

8 warm bath or shower or whenever the body is warmed up. The head may be positioned directly downward, resting on the hands, or turned to the left or right, or alternated during the course of twenty minutes. 5. Kneeling on the floor