What is ankylosing spondylitis?
Ankylosing spondylitis (AS), pronounced an-kee-lo-zing spon-dee-litis, typically starts in your spine or pelvis and may spread to affect your neck and eyes. Signs and symptoms that often represent AS are stiffness or aches in your spine, hips and neck. The condition is commonly mistaken for a general back ache or pain.
Additional symptoms may be aches and pains in a number of areas, such as neck, shoulders and thigh. Swelling can sometimes occur in small joints, such as toes and fingers, but also cause inflammation that results in swollen ankles and knees.
The exact cause of ankylosing spondylitis is not known. It seems that in almost all cases, the disease runs in the family, particularly in people who carry the HLA-B27 gene.
However, only about one in every eight people who have the HLA-B27 gene will develop ankylosing spondylitis, so having the gene does not necessarily mean that the disease will be passed on from parents to their children. For people who carry HLA-B27 and have a parent, brother or sister with ankylosing spondylitis, the risk of developing the disease is about one in five.
Ankylosing spondylitis affects about 1–2% of Australians. The disease usually first appears between the ages of 15–40 years and is about three times more common in men than in women.
Ankylosing spondylitis (AS) is a condition that mainly affects the spine. The joints of the neck, back and pelvis become inflamed, causing pain and stiffness. The sacroiliac joints are commonly affected in AS. These joints connect the base of your spine (sacrum) to your pelvis. Other joints, such as the hips and shoulders, can also be involved. AS can also affect other parts of the body, such as the eyes, skin, bowel and lungs.
Symptoms of AS
The symptoms of AS usually begin between the ages of 15 and 45 years. The symptoms of AS vary from person to person. The most common are;
- Pain and stiffness in the back, buttocks or neck.
- Symptoms worse after rest (for example, in the early morning) and relieved with exercise.
- Pain in tendons (which connect muscles to bones) and ligaments (which connect bones to each other), often felt as pain at the front of the chest, back of the heel or underneath the foot.
How will my doctor diagnose ankylosing spondylitis?
Many people in the early stages of AS think they have common back pain and do not seek help. However it is important to have AS diagnosed as early as possible as there are many effective treatments available. Your doctor will diagnose AS from your symptoms, a physical examination and blood tests to measure levels of inflammation. Your doctor may also order x-rays of your spine, but these tests can all be normal in the early stages. If your doctor suspects you have AS you should be referred to a rheumatologist, a doctor who specialises in arthritis.
Your rheumatologist will tailor your treatment to your symptoms and severity of your condition. There is no way of predicting exactly which treatment will work best for you. Each treatment has it’s own benefits and risks. Your doctor may need to trial several different treatments before finding the one that is right for you.
For more information on AS, click here to download the AS information sheet from Arthritis Australia, or see ‘Taking control of your Ankylosing Spondylitis’ as a practical guide to treatments, services and lifestyle choices, again from Arthritis Australia.
Living with ankylosing spondylitis
With the right treatment, most people with AS can lead full and active lives. Many people find there are times when their symptoms worsen (known as a ‘flare’), and times when their symptoms get better. In most cases AS can be well controlled with treatment and the pain improves over time. However some people may have severe, long lasting pain. As a result of the inflammation in the spine, new bone may grow around the joints. This leads to permanent stiffness in the back or neck of some people with AS. In severe cases this extra bone can fuse the bones in the spine together, stopping the spine from moving. Fusion of the spine can lead to a bent or forward stooped posture. This used to be common but can now usually be prevented by starting proper treatment as early as possible.
Currently there is no cure for AS. However treatment for AS has improved dramatically, with new medicines that are extremely helpful in controlling the condition. Be wary of any products or therapies that claim to cure AS.
Living with ankylosing spondylitis can be challenging at times, however there are many useful tools and resources that can assist you, with some key guiding principles;
- Take control by knowing your disease.
- Don’t delay, see your doctor.
- Work with your healthcare team and be an important part of it.
- Know about your treatment options.
- Find new ways to stay active.
- Learn techniques to help manage your pain.
- Acknowledge your feelings and seek support.
- Make food choices that count.
- Balance your life.
- Call your local State or Territory Arthritis Office.
For more information on each of the above see Arthritis Australia’s ‘Taking control of your Ankylosing Spondylitis’ as a practical guide to treatments, services and lifestyle choices.
For more information and/or a guide for young adults, download the Living with arthritis, A guide for young adults booklet from Arthritis Australia website.
Will medicine cure my ankylosing spondylitis?
At present, there is no ‘cure’ for ankylosing spondylitis. However, early use of the right medicines can slow down any damage caused by the disease, relieve pain and stiffness, and reduce the possibility of long-term disability. The aim of treatment is to achieve remission — the absence of any symptoms and a return to normal function of your joints.
What is the right medicine for me?
All medicines have risks and benefits, so before you start treatment talk to you doctor and pharmacist about how each medicine should be helping you and what risks it might have. Make sure your doctor knows about any other health problems that you or your family members have, as this can help them choose the best medicine for you, and be sure to act early, as early use of the right medicines can slow down the damage caused by the disease, relieve pain and stiffness, and reduce long-term disability.
You should also make sure that you understand what side effects the medicine might have, including what to do or whom to speak to if you experience any unwanted effects from your medication.
Many medicines need to be taken regularly to work properly and should not be stopped suddenly — talk to your doctor if you have concerns about side effects, safety or cost. As you may have heard in our speaker interviews, each person responds differently to arthritis medicines, which means that you will need to work with your specialist and GP to find the best medications and doses for you. This can take time, but by finding the most effective medicines with the least side effects, you can hope to really make a difference in controlling your condition.
Your disease may also change over time, including which joints are affected, how much pain or disability you experience and whether you have symptom-free periods. This means that you may need to change or add medicines over the course of your treatment — you may not be on the same medicine forever.
Some medicines can only be used once other medicines are no longer effective in controlling your arthritis, do speak to your doctor about any concerns you may have.
The following medicines may be used at various points in your journey;
- Painkillers such as paracetamol are often very helpful. They can be taken regularly and are particularly useful just before activity to keep your pain to a minimum. It’s best not to wait until you’re in severe pain before taking them. They don’t need to be taken with a meal, though some water and a small snack are advised.
- There’s a wide range of non-steroidal anti-inflammatory drugs (NSAIDs) that can reduce pain so you can get on with your daily activities and your exercise routine. You’ll probably need to take these during bad patches, and some people may need them over a longer period. Some tablets are made in a slow-release formulation, which can help with night-time pain and morning stiffness. Some NSAIDs are also available as gels, which you can apply to the painful area. Like all drugs, NSAIDs can sometimes have side-effects, but your doctor will take precautions to reduce the risk of these, for example by prescribing the lowest possible dose for the shortest possible period of time.
- Steroids can be used as a short-term treatment for flare-ups. They’re usually given as an injection into a swollen joint or as a slow-release injection into a muscle. They can also be used for painful tendons, for example at the heel, although they won’t be repeated very often as this may lead to tendon weakness. Occasionally, you may be given a course of steroid tablets. While these treatments can be very effective at improving pain and stiffness, you may develop side-effects if you use them for long periods, for example, weight gain, bruising or thinning of the skin, high blood pressure, high blood sugar or osteoporosis. If you develop eye inflammation, it will usually be treated with steroid eye drops. In more severe cases, steroids may be given as tablets or as an injection into the eye.
- Disease-modifying anti-inflammatory drugs (DMARDs) are designed to reduce damage to the joints rather than just ease your symptoms. They’re slow-acting so you won’t notice an immediate impact, but they’re very effective over a period of time. Drugs such as these can be helpful for arthritis in the joints of your arms and legs, although they’re not usually effective for spinal symptoms. When taking DMARDs, you’ll need regular check-ups and blood tests to monitor their effect.
- Biological therapies are relatively new treatments that can be very effective for ankylosing spondylitis. A number of drugs are currently available for ankylosing spondylitis. These biological therapies are currently only available to patients with more severe forms of the condition if it can’t be controlled with anti-inflammatory drugs and they may not be suitable for everyone. The effect of these drugs will be monitored, and you’ll need to complete questionnaires regularly which assess how active your disease is and how well it’s responding to treatment.
Exercise and activity information
Physical activity protects joints by strengthening the muscles around them. Strong muscles and tissues support those joints that have been weakened and damaged by arthritis. A properly designed program of physical activity reduces pain and fatigue, improves mobility and overall fitness, and alleviates depression. Physical activity allows someone with arthritis to have a more productive, enjoyable life. There are different types of exercises that you can do to lessen your pain and stiffness;
- Range of motion exercises reduce pain and stiffness and keep your joints moving. To achieve the most benefit, these exercises should be done daily.
- Strengthening exercises maintain or increase muscle tone and protect your joints.
- Moderate stretching exercises help to relieve the pain and keep the muscles and tendons around an affected joint flexible.
- Endurance exercises strengthen your heart, give you energy, control your weight and help you feel better overall. These exercises include things like walking, swimming and cycling. It is best to avoid high-impact exercises like step aerobics, jogging or kickboxing.
Inflammation in your muscles, tendons and other tissues may make it harder for you to stand up straight, turn and bend, or take a deep breath. Your physiotherapist or exercise physiologist can suggest suitable exercises to stretch and strengthen your muscles. These exercises will improve your posture and help to maintain flexibility. You should aim to do this stretching program every day, or at least five times per week. If you experience early morning stiffness, gentle stretching exercises under a warm shower will also help.
In addition to your stretching exercises, it is important to do at least 30 minutes of moderate exercise on most days of the week for your general fitness. You can do this either in one go or break your exercise into smaller efforts (for instance, three 10-minute or two 15-minute blocks per day).
Activities that are likely to be good for your fitness include walking, swimming, water exercise, low-impact aerobics and riding a bicycle or exercise bike. Your physio or exercise physiologist can also suggest specific exercises and stretches that are appropriate for your situation.
Ask your physio or exercise physiologist to create a special exercise program you can do at home or at the local gym or swimming pool.
In addition, Australian cricketing legend, Michael Slater, has partnered with Arthritis Australia to produce an AS exercise video. Slater, who has AS, demonstrates specific stretching exercises which have been designed to help people with AS manage their symptoms. The exercises were developed by physiotherapists and the video is endorsed by the Australian Physiotherapy Association (APA) and Australian Rheumatology Association (ARA). This video is available from the AS section of the Arthritis Australia website. Visit www.arthritisaustralia.com.au
Protecting your spine and joints
While healthcare professionals can offer a range of treatments for your ankylosing spondylitis, there are many things you can do too. The Australian Government’s Healthy Direct website provides straightforward suggestions for good eating and activity levels – visit www.healthdirect.gov.au
Quitting smoking is an important first step to help your joints – call the Quitline on 13 18 48 or visit www.quitnow.gov.au Talk to your doctor or other care team members before making lifestyle changes.
When it comes to diet, there is very little evidence that particular foods are good or bad for people with inflammatory conditions such as ankylosing spondylitis and there is certainly no diet proven to ‘cure’ it. Eating a balanced diet that is low in saturated fat, sugar and
salt, but high in fruit, vegetables and cereals is good for most people. This can help you lose weight (if required), which may reduce the strain on your lower back, hips, legs and feet.
The Australian Government provides advice about the amount and kinds of foods that we need to eat for health and wellbeing, including Australian Dietary Guidelines, at www.eatforhealth.gov.au.
For help in working out the best things to eat, you can ask your GP to refer you to a dietitian or find one directly via the Dietitians Association of Australia — call 1800 812 942 or visit www.daa.asn.au.
Pregnancy and ankylosing spondylitis
For women, the disease should not interfere with pregnancy, but you will need to discuss your medications with your doctor to minimise potential harm to your unborn baby. Some arthritis medicines can still be used during pregnancy if necessary, but many can harm the foetus and should not be taken while trying to conceive, when pregnant or during breastfeeding. For men, you should discuss your family’s pregnancy plans with your doctor so that they can review your medications if necessary.
‘Arthritis, Pregnancy and the Path to Parenthood’, published by Suzie May, details Suzie’s experience as a young Australian woman with ankylosing spondylitis, along with the experiences of other men and women from around the world as they fulfil their goal of becoming parents, despite their arthritis. This practical guide can help you understand the potential challenges you may face and give you strategies to overcome these challenges. The book is available here.
Thank you to Arthritis Society (Canada) and Arthritis Research UK for contribution of content and materials to the above overview.
What treatments are available?
Beyond treatment, there are a number of other factors which might assist:
- Physiotherapy exercises (such as hydrotherapy or exercises in water), to keep the spine flexible and improve posture
- Learning about AS and playing an active role in your treatment. Not all information you read or hear about is trustworthy so always talk to your doctor or healthcare team about treatments you are thinking about trying. Reliable sources of further information are also listed in the section below. In addition, self-management courses aim to help you develop skills to be actively involved in your healthcare. Contact your local Arthritis Office for details of these courses.
- Learning ways to manage pain in the back or neck
- Live a healthy life. Eat a healthy diet, stop smoking and reduce stress to help manage pain and your overall health and wellbeing. See the Healthy eating information sheet from Arthritis Australia.
- Staying active;
- It is important to do regular sports and activities for general fitness and wellbeing. See the Physical activity information sheet or ask your physiotherapist for advice.
- Acknowledging your feelings and seeking support;
- As there is no cure for AS and it can affect many parts of your life, it is natural to feel scared, frustrated, sad and sometimes angry. Be aware of these feelings and get help if they start affecting your daily life.
- Learning relaxation and coping skills;
- Developing good relaxation and coping skills can help you maintain balance in your life, giving you a greater feeling of control over your arthritis and a more positive outlook. Relaxing the muscles around a sore joint reduces pain. There are many ways to relax. Try deep breathing exercises. Listen to music or relaxation tapes. Imagine or visualise a pleasant activity, such as lying on a beach.
- Healthy eating;
- The most important link between your diet and arthritis is your weight. Being overweight puts an extra burden on your weight-bearing joints (back, hips, knees, ankles and feet). Maintaining an appropriate weight will help you more than any food supplements. If you are overweight and have arthritis, consider a balanced diet as a way to help you achieve and maintain a healthy weight. For others, healthy eating may give you the energy to complete your daily activities. Proper nutrition is vital to controlling body weight and managing arthritis symptoms.
- For more information, read The Arthritis Society of Canada’s Nutrition & Arthritis Guide [PDF] and watch the Nutrition and Arthritis video.
- Watching your eye health;
- About 30 per cent of people with AS will develop iritis (eye inflammation). This is a rapid onset of inflammation in the front of the eyeball. The eye may feel irritated and there may be pain in the eye or surrounding area. You could experience headaches, blurred vision or sensitivity to light. It usually happens in one eye only. If you think you may have iritis, you need to see an ophthalmologist (eye specialist). Prescription eye drops may stop the attack and prevent potential loss of vision.
- Take care of your bones;
- People with AS may develop a fused spine. Often the fused spine can become brittle and become prone to easy breaks (fractures). Generally, people with AS should be taking calcium and vitamin D supplements, but do check this with your Doctor before doing so. Activities involving forward bending or heavy lifting should also be avoided. Fractures are more common in AS when the spine is fused.
- Fusion of the spinal joints in AS usually occurs in the late stages of the disease and may limit movement.
What other assistance is available?
There are many resources available to help people with AS. Your doctor may put you in touch with a social worker, who can help explain the financial and health services that are available to you. These can include any pensions or allowances that you might be entitled to, plus any financial assistance such as Health Care Concession Cards or low-cost treatment programs. Your local council, community health centre, community group or religious organisation may also offer programs that include practical advice, activities, social networks or just someone to talk to. Arthritis Australia is always here to help too.
Contact your State/Territory Arthritis Office (on the details outlined below) to find out about their wide range of resources, management programs and support groups – call 1800 011 041 or visit www.arthritisaustralia.com.au.
In addition, there are Independent Living Centres in each state that provide advice on products and services, including aids and devices, that can help with day-to-day activities. Visit www.ilcaustralia.org.au or call 1300 885 886 for your closest centre or more information.
Who can help?
There are many people who can help you deal with both the functional and emotional side of AS. Your first step is to try to talk honestly with your partner, parents or children about how you feel. Give them a chance to talk too – they might have worries or feel that they don’t know enough about your disease and how it is affecting you.
Visit your GP if you are worried about how well you are coping, as your GP may be able to suggest additional ways of coping, or may prescribe medicines if you are especially worried or depressed. Many people with AS will also visit a physiotherapist (physio). These practitioners can use various treatments, including exercise therapy and hydrotherapy (water exercise), to keep your joints as flexible, strong and pain-free as possible. They will also show you exercises and pain-relief techniques to use at home.
You might also visit an occupational therapist (OT), or they may come to your home or work. OTs can provide advice on how to do things in a way that reduces joint strain and pain and teach you strategies to protect the mobility of your joints.
An exercise physiologist can give you advice about exercise, including how to get started safely and the best type of exercise for your health and ability.
Your GP may also refer you to a counsellor or psychologist, who can talk to you about your worries, feelings and moods, then suggest practical ways to work through them. If you want to contact a psychologist directly, call the Australian Psychological Society on 1800 333 497 or visit www.psychology.org.au. Beyondblue also provides information and advice about depression, anxiety, available treatments and where to get help. Visit www.beyondblue.org.au or call 1300 22 4636. Lifeline provides a 24hr confidential telephone crisis support service for anyone across Australia experiencing a personal crisis. Call 13 11 14.
Arthritis Infoline: 1800 011 041
Please call our toll free national Arthritis Infoline number for information about arthritis and other musculoskeletal conditions including self-management, community programs, seminars, support groups, resources etc. The infoline is staffed by health professionals and specially trained volunteers who are able to answer most questions about living with arthritis. Alternatively, contact Arthritis Australia, or your local state or territory using the details below.
Arthritis Australia
Phone: (02) 9518 4441
Fax: (02) 9518 4011
Email: [email protected]
Website: www.arthritisaustralia.com.au
Freecall: 1800 111 101
State and Territory Support
Australian Capital Territory
Phone: (02) 6251 2055
Fax: (02) 6251 2066
Email: [email protected]
Web site: www.arthritisact.org.au
Infoline: 1800 011 041
New South Wales
Phone: (02) 9857 3300
Fax: (02) 9857 3399
Email: [email protected]
Web site: www.arthritisnsw.org.au
Infoline: 1800 011 041
Northern Territory
Phone: (08) 8948 5232
Fax: (08) 8948 5234
Email: [email protected]
Web site: www.aont.org.au
Infoline: 1800 011 041
Queensland
Phone: (07) 3857 4200
Fax: (07) 3857 4099
Email: [email protected]
Web site: www.arthritis.org.au
Infoline: 1800 011 041
South Australia
Phone: (08) 8379 5711
Fax: (08) 8379 5707
Email: [email protected]
Web site: www.arthritissa.org.au
Infoline: 1800 011 041
Tasmania
Phone: (03) 6228 4824
Email: [email protected]
Website: www.arthritistas.org.au
Infoline: 1800 011 041
Victoria
Infoline: 1800 011 041
Western Australia
Phone: (08) 9388 2199
Fax: (08) 9388 4488
Email: [email protected]
Website: www.arthritiswa.org.au
Infoline: 1800 011 041
Further information
Australian resources
To download the Arthritis Australia/ Michael Slater AS exercise video go to
www.arthritisaustralia.com.au
For access to quality online information about ankylosing spondylitis, start at HealthDirect
www.healthdirect.gov.au
For advice on healthy eating and appropriate exercise, visit Healthy Active
www.healthyactive.gov.au
For advice on quitting smoking, contact the Quitline
www.quitnow.gov.au
Ph: 13 18 48
To find a specialist, contact the Australian Rheumatology Association
www.rheumatology.org.au
Ph: (02) 9252 2356
To find a physiotherapist, contact the Australian Physiotherapy Association
www.physiotherapy.asn.au
Ph: 1300 306 622
To find an exercise physiologist, contact Exercise and Sports Science Australia
www.essa.org.au
Ph: (07) 3171 3335
To find an occupational therapist, contact Occupational Therapy Australia
www.otaus.com.au
Ph: 1300 682 878
To find a dietitian, contact the Dietitians Association of Australia
www.daa.asn.au
Ph: (02) 6163 5200
To find a psychologist, contact the Australian Psychological Society
www.psychology.org.au
Ph: 1800 333 497
International resources
The public area on the website of the American College of Rheumatology contains many useful resources
www.rheumatology.org
The UK National Ankylosing Spondylitis Society provides specific information and publishes a useful guidebook that demonstrates many practical exercises for your condition
www.nass.co.uk
Arthritis Research UK also provides a wide variety of information for people with arthritis
www.arthritisresearchuk.org
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