Non-radiographic Axial Spondyloarthritis

What is non-radiographic Axial Spondyloarthritis?

Non-radiographic Axial Spondyloarthritis (nr-axSpA) is an autoimmune disease which causes arthritis in the spine and pelvis.

While ‘non-radiographic Axial Spondyloarthritis’ is a very complicated name, it can be understood as:

• Non-radiographic: the inflammation will not show up on an x-ray (radiograph) but may show up on an MRI (magnetic resonance imaging) scan.
• Axial: it mainly affects the spine (rather than arms or legs).
• Spondyloarthritis: arthritis that affects the joints as well as sites where ligaments and tendons join the bone.

While the body’s immune system is designed to fight infections to keep you healthy, in people with nr-axSpA, the immune system creates inflammation in the joints of the spine and pelvis. This causes pain and stiffness and may lead to joint damage. In its early stages, nr-axSpA can be mistaken for general back pain.

Back pain can affect almost everyone in the population at any stage of life and in most cases is not caused by inflammation. A much smaller number of people, around 30,000 Australians, are affected by nr-axSpA. The cause of the condition is not known, but doctors believe it is closely related to another form of inflammatory arthritis known as ankylosing spondylitis (AS). In fact, one or two out of every 10 patients diagnosed with nr-axSpA will progress to AS within a few years. Often, these individuals possess a gene called HLA-B27.

Doctors may suspect nr-axSpA in people who develop back pain before the age of 40 and when pain and stiffness develop gradually and persist for at least three months; when pain and stiffness tend to ease with physical activity and exercise; when rest does not provide relief from back pain and stiffness; and when pain and discomfort increase when asleep or resting, improving when up and moving.

Symptoms of nr-axSpA

The symptoms of nr-axSpA usually begin between the ages of 15 and 40 years and are often very similar to the symptoms of a related form of arthritis, known as ankylosing spondylitis. Symptoms can vary from person to person, but commonly include:

• Pain and stiffness in the back or buttocks.
• Pain that worsens after rest (for example, after waking up) and is relieved by 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 nr-axSpA?

Many people in the early stages of nr-axSpA think they have common back pain and do not seek help. However, it is important to have nr-axSpA diagnosed as early as possible in order to allow for effective treatment.

The process of diagnosis often begins with assessment by a general practitioner, but a definite diagnosis is often only made after referral to a rheumatologist.

A rheumatologist will diagnose nr-axSpA based on an evaluation of your symptoms, a physical examination, blood tests and imaging tests such as x-ray and MRI.

People with nr-axSpA will have inflammation in the spine and pelvic (sacroiliac) joints that can be detected through a number of tests. Tests that will help with diagnosis commonly include:

• Blood tests that measure the level of inflammation in the body, such as C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR). Your doctor may continue to do these tests over time to monitor disease activity.
• A blood test to check for the presence of a gene known as HLA-B27. Nr-axSpA is less likely in a person with a negative HLA-B27 result (although it can occur).
• Imaging tests such as magnetic resonance imaging (MRI) to detect inflammation earlier than is possible with x-ray. 

Living with nr-axSpA

With the right treatment, most people with nr-axSpA 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, nr-axSpA 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 nr-axSpA.

Currently there is no cure for nr-axSpA. However, treatment has improved dramatically, with new forms of medicine that are very helpful in controlling the condition.

Living with nr-axSpA can be challenging at times, however there are many useful tools and resources that can assist you, with some key guiding principles:

1. Take control by knowing about your disease.
2. Don’t delay, see your doctor.
3. Work with your healthcare team and be an important part of it.
4. Know about your treatment options.
5. Find new ways to stay active.
6. Learn techniques to help manage your pain.
7. Acknowledge your feelings and seek support.
8. Make healthy food choices.
9. Cut out exposure to cigarette smoke (directly or passively).
10. Call your local State or Territory Arthritis Office for advice and support.

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 improve my nr-axSpA?

Early use of the right medicines can reduce the rate of inflammation 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 your 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 and whom to speak to if you experience any unwanted effects from your medication.

Many medicines need to be taken regularly to work effectively and should not be stopped suddenly – talk to your doctor if you have concerns about side-effects, safety or cost. 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 make a significant 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.

Some medicines can only be used once other medicines are no longer effective in controlling your arthritis, so speak to your doctor about any concerns you may have.

The following medicines may be used at various points in your journey:

• 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 cause 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 or by avoiding this type of medication all together. This form of medicine may be considered unsafe in people with kidney and/or heart disease, a history of stomach ulcers or allergy to NSAIDs.
• Biologic therapy is a relatively new treatment that can be very effective for non-radiographic axial spondyloarthritis. This medicine is injected and works to block a specific protein responsible for painful inflammation triggered by the body’s immune system. It is currently only available to patients with more severe forms of the condition which can’t be controlled with anti-inflammatory drugs and they may not be suitable for everyone. The effect of the drug will be monitored, and you’ll need to complete questionnaires regularly which assess how active your disease is and how well it is 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 undertaken 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.

Inflammation in your 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 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.

Protecting your spine and joints

While healthcare professionals can offer a range of treatments for nr-axSpA, there are many things you can do too. The Australian Government’s Health 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. Smoking may accelerate the damage to your joints and could also prevent some medicines from working as well as they should. Call the Quitline on 137 848 or visit www.health.gov.au/contacts/quitline. 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 nr-axSpA. 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 nr-axSpA

For women, nr-axSpA 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.

To learn more about pregnancy and Arthritis click here

For men, you should discuss your family’s pregnancy plans with your doctor so that they can review your medications if necessary.

What other assistance is available?

There are many resources available to help people with nr-axSpA. Your doctor may develop an Enhanced Care Plan and put you in touch with allied health professionals, such as physiotherapists, dietitians, exercise physiologists or occupational therapists.

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 here to help as well – call 1800 011 041 or visit www.arthritisaustralia.com.au.

You can also contact the local Arthritis office in your State/Territory (contact details below) to find out about their wide range of information resources, arthritis management programs and support services.

Who can help?

There are many people who can help you deal with both the functional and emotional side of nr-axSpA. 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 nr-axSpA will also visit a 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.

For more detailed information, see our booklet Taking control of your ankylosing spondylitis and visit our condition specific website MyAS  or our inflammatory arthritis website empowered.org.au .