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Ankylosing Spondylitis

Ankylosing spondylitis (AS) is a form of arthritis. It mainly affects the lower back. Other joints and other parts of the body are sometimes affected. Treatment includes regular exercise and anti-inflammatory drugs. The severity of AS varies from mild to severe. It is mild or moderate in most cases.

What is ankylosing spondylitis?

 Spondylitis means inflammation of the spine.  Ankylosing is a word that describes bones that tend to join together (fuse) across a joint.

In ankylosing spondylitis (AS), the discs and ligaments of the lower spine become inflamed. The discs and ligaments are the strong tissues that connect the spinal bones (vertebrae) together. The joints between the lower spine and the pelvis (the sacro-iliac joints), and the small facet joints between the vertebrae are also commonly affected. Inflammation around the lower spine that persists long-term can cause scarring. This may, over time, cause some of the vertebrae in the spine to fuse together.

In some cases, inflammation occurs in other joints and in other parts of the body outside of the spine (detailed below).

Who gets ankylosing spondylitis?

AS usually develops in teenagers or young adults. It rarely first develops after the age of 40. It is three times more common in men than women. There may be a family history with two or more members of a family being affected. About 1 in 1000 people in the UK have AS.

What causes ankylosing spondylitis?

The cause of AS is not known. There is a strong genetic (hereditary) part. Something may 'trigger' AS to develop in people who have an inherited tendency to have it. The trigger is not known. Page 2 of 4

What are the symptoms of ankylosing spondylitis?

Back pain The main symptom is back pain. The pain usually starts in the lower back. You may think of it as just mild backache at first. It typically becomes worse over several months. You may have aching over your buttocks, and down the back of your thighs. Coughing or straining may make it worse. Rest does not make it better. Instead, exercise usually eases the pain. The pain tends to be worse first thing in the morning. Lying in bed after waking is often uncomfortable. The pain tends to ease as the day goes on. The middle (chest part) of the spine may become affected. If this occurs the joints between the ribs and the spine may also become painful.

Stiffness in the lower spine The stiffness can be quite severe first thing each morning. It usually improves with activity and exercise, and tends to ease as the day goes on.

Other joint symptoms apart from the spine Other joints are affected at some stage in about 4 in 10 cases. The most common are: the hips, knees, ankles, and shoulders. Affected joints can become painful, stiff, and swollen.

Inflammation of tendons and ligaments Tendons and ligaments may become inflamed and painful where they attach to bones. Common examples (apart from the spinal ligaments) are the Achilles' tendon where it attaches to the heel, and where chest muscles attach to the ribs. However, it can occur in various parts of the body.

Inflammation of part of the eye (uveitis) This affects about 1 in 3 people with AS from time to time. Tell a doctor urgently if you have AS and develop a painful or red eye. If you develop uveitis, treatment with eye drops is best started as soon as possible after eye symptoms begin.

Associated diseases Some other 'inflammatory' conditions develop more commonly than normal in people who have AS. For example, people with AS have a greater than average chance of developing bowel inflammation (ulcerative colitis or Crohn's disease), and skin inflammation (psoriasis).

General symptoms Some people with AS feel generally unwell with symptoms of tiredness or depression. Weight loss or anaemia sometimes occur.

How is ankylosing spondylitis diagnosed?

When the condition first starts, there is no test that can confirm the diagnosis. The diagnosis is usually made by the typical symptoms. Blood tests may be done to rule out other forms of arthritis. However, as the disease progresses, typical changes develop on x-ray pictures of the sacro-iliac joints and spine. (The pictures show the bones gradually fusing together. These changes may take several years to become bad enough to be seen on x-ray pictures.)

How does ankylosing spondylitis progress?

Symptoms can vary in severity and usually wax and wane. Flare-ups of inflammation which cause periods of worse pain and stiffness tend to occur from time to time. If joints outside your spine are affected, they tend to flare up at the same time as back symptoms. The number of flare-ups that occur, how severe they are, and how long they last can vary greatly from person to person.

In time, the mobility and flexibility of your spine may be reduced. This occurs as the inflammation causes gradual 'fusion' (joining together or ankylosis) of some of your vertebrae. The number of vertebrae involved and the extent of any fusion varies from person to person. A stooping (bent- over) deformity may occur in severe cases. Page 3 of 4

What are the treatments for ankylosing spondylitis?

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 AND POSTURE

Exercise is the most important treatment. It is vital to have a good posture and a regular exercise routine. This helps you to keep a full range of spinal movement, and to prevent your spine from 'stiffening up'. Regular exercise is thought to limit the extent of any spinal deformity that may develop. Exercise may also ease back pain. You will normally be referred to a physiotherapist who will advise on the types of exercise. The advice may include:

 When sitting, keep your back straight and erect. Move your neck and back frequently. This may require changes to chair, desk, or work routines.  Every day, lie face down for 20 minutes before getting out of bed. Do this again before going to sleep. This helps to stop the tendency for the spine to become fixed in a bent position.  Sleep on a firm bed.  Exercises to maintain the full range of movement of your spine.  Breathing exercises to help maintain the full movement of your ribcage.

Exercises should become a routine part of life. Aim for at least 2-4 hours of exercise per week. Swimming is an excellent additional exercise.

MEDICATION

Anti-inflammatory painkillers 'Anti-inflammatories' are used to ease a flare-up of symptoms. They reduce inflammation, and ease pain. However, they do not alter the course of the disease. An important part of these drugs is to ease pain so that you can do regular exercises without much discomfort. There are several different brands of anti-inflammatory painkillers. For example, ibuprofen, diclofenac and naproxen - but there are many others. If one does not suit, another may be fine. Side-effects sometimes occur with these drugs. For example:

 Stomach pain and bleeding from the stomach are the most serious. The risk of this is higher if you are over 65, or have had a duodenal or stomach ulcer. Stop taking the drug and see a doctor if you develop stomach or abdominal symptoms.  You may not be able to take anti-inflammatory painkillers if you have asthma, high blood pressure, kidney failure, or heart failure.

Ordinary painkillers Painkillers such as paracetamol may be sufficient if symptoms are mild between flare-ups. You can also taker paracetamol in addition to an anti-inflammatory for top-up pain relief.

TNF antagonists TNF stands for Tumour Necrosis Factor. It is a chemical that is released by some cells involved in inflammation. Drugs that counter TNF (TNF antagonists) have been shown to reduce inflammation and ease symptoms in some people with AS. TNF antagonists include etanercept and infliximab. They are given by injection and require special monitoring as some people develop serious side- effects. A specialist may advise using one of these drugs if you have moderate or severe AS which has not been helped much by anti-inflammatory painkillers.

Other medication Occasionally, other drugs are sometimes used.

 A steroid injected directly into a badly inflamed joint is sometimes used to ease symptoms.  Some drugs that are used to reduce joint damage in rheumatoid arthritis are sometimes tried. For example, sulphasalazine and methotrexate. They do not work as well as in Page 4 of 4

rheumatoid arthritis, but may be considered when non-spine joints are affected. People who take these drugs need careful monitoring as there is a risk from serious side-effects. Research continues to clarify their role in AS. A specialist can advise on the up-to-date research relating to these drugs and when one should be used.  Drugs called bisphosphonates have shown promising results in research trials. Further research is needed to clarify their role in the treatment of ankylosing spondylitis.

OTHER TREATMENTS

 TENS machines are sometimes used to ease pain. (These give tiny electrical currents into the affected area.)  Heat, for example, a hot shower, may help to ease pain, particularly each morning.  Some people find regular massage is soothing.  About 1 in 20 people with AS need a hip replacement at some stage as a hip sometimes becomes badly affected. Rarely, surgery is needed to correct a severe spinal deformity.

What is the outlook (prognosis) for people with ankylosing spondylitis?

Although there is no cure for AS, the outlook is quite good. After an initial period of inflammation, in many cases the disease settles down to a low level of activity. Flare-ups of symptoms occur from time to time, but are often mild or moderate. In most cases, regular exercise and medication keep symptoms away, or much reduced. The lower spine tends to become more stiff and less flexible over the years. In some cases, the stiffness is more severe than in others.

About 9 in 10 people with AS have a good quality of life, remain independent, and develop little or no disability as a result of their condition. Most people with AS are able to work full-time for the whole of a normal working life. However, heavy manual work may become difficult. About 1 in 10 people with AS have a severe form of the disease, and may become quite disabled over time.

In most cases, episodes of arthritis outside the spine and/or eye inflammation do not occur, or only occur now and again. In a small number of cases these problems outside the spine recur frequently, or become severe. Uveitis (eye inflammation) may lead to blindness if not treated.

People with established AS have an increased risk of fracturing the spine if they are involved in a high impact accident such as a car crash. (This is because the spine becomes more easy to fracture as it becomes more stiff and rigid.)

Further help and information

The National Ankylosing Spondylitis Society PO Box 179, Mayfield, East Sussex, TN20 6ZL Tel: 01435 873 527 Web: www.nass.co.uk Provides information and support. For example, the society has a network of over 100 centres in the UK that provide weekly exercise sessions supervised by a physiotherapist. They also publish and sell an audio cassette and a home-exercise video.

Arthritis Research Campaign - ARC Copeman House, St Marys Court, St Marys Gate, Chesterfield, Derbyshire, S41 7TD. Tel: 0870 850 5000 Web: www.arc.org.uk

Arthritis Care 18 Stephenson Way, London, NW1 2HD Helpline: 0808 800 4050 Web: www.arthritiscare.org.uk

© EMIS and PIP 2005 Updated: May 2006 PRODIGY Validated

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