This sheet has been written for people affected by ankylosing spondylitis. It provides general information to help you understand how you may be affected and what you can do to manage it. It also tells you where to find further information and advice.

What is ankylosing spondylitis (AS)?

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. The symptoms of AS usually begin between the ages of 15 and 45 years.

What causes it?

It is not known what causes AS. Unlike other types of back pain, AS isn’t caused by particular jobs, activities or injuries. You are more likely to get AS if you have a history of it in your family. There is a gene called HLA-B27 that is associated with AS. Almost nine out of ten people with AS test positive for this gene. However HLA-B27 is present in 8% of the general population, including healthy people without AS. Recently, two new genes (IL23R and ARTS1) have also been found to be associated with ankylosing spondylitis.

How is it diagnosed?

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.

What will happen to me?

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.

Can AS be cured?

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.

What treatments are there for AS?

Your Rheumatologist will tailor your treatment to your symptoms and the severity of your condition. There is no way of predicting exactly which treatment will work best for you. Each treatment has its own benefits and risks. Your doctor may need to trial several different treatments before finding the one that is right for you. Treatment for AS usually involves:

physiotherapy exercises (such as hydrotherapy or exercises in water), to keep the spine flexible and improve posture
medicines, such as:
- analgesics (pain relievers, such as paracetamol)
- non-steroidal anti-inflammatory drugs (NSAIDs)
- corticosteroid medicines or injections
- disease-modifying anti-rheumatic drugs (DMARDs) biological DMARDs.

What can I do?

See a Rheumatologist. A Rheumatologist can diagnose AS and make sure you get the right treatment. If you have AS and have not seen a Rheumatologist, ask your doctor about a referral. See the Working with your healthcare team information sheet.

Learn about AS and play 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. 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.

Learn ways to manage pain.

Live a healthy life. Eat a healthy diet, stop smoking and reduce stress to help your overall health and wellbeing.

Stay active. It is important to do regular sports and activities for general fitness and wellbeing.

Acknowledge your feelings and seek 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.

© Copyright Arthritis Australia 2007. Reviewed May 2015.
Disclaimer: This sheet is published by Arthritis Australia for information purposes only and should not be used in place of professional advice.

Source: A full list of the references used to compile this sheet is available from your local Arthritis Office. The Australian General Practice Network, Australian Physiotherapy Association, Australian Practice Nurses Association, Pharmaceutical Society of Australia and Royal Australian College of General Practitioners contributed to the development of this information sheet. The Australian Government has provided funding to support this project.

What is a Rheumatologist?

A Rheumatologist is a specialist physician who has expertise in diagnosing and treating diseases of the joints, muscles and bones. Sometimes the term rheumatic disease or ‘rheumatism’ is used to describe this group of diseases.

There are also a number of rarer rheumatic conditions that can affect other parts of the body including the skin, hair and internal organs. These include “lupus”, myositis, vasculitis and scleroderma.

The more common rheumatic diseases include:

Rheumatoid Arthritis
Psoriatic Arthritis
Ankylosing Spondylitis
Gout
Back and neck pain
Osteoarthritis
Muscle and tendon injury/tear
Tendonitis
Fibromyalgia
Polymyalgia Rheumatica
Bone Disease
Osteoporosis
Paget’s disease

What do you charge for consultations?

Initial Consultation Fees

Our full private rate for an initial 45 minute appointment is $380 (which comes down to $145 after your Medicare Rebate of $234.85 is refunded to you)
Our Health Care Card/Full-time Student/COVID rate is $320 ( (which comes down to $85 after your Medicare Rebate of $234.85 is refunded to you)
Our Pension rate is $290 ( (which comes down to $55 after your Medicare Rebate of $234.85 is refunded to you)

Follow-up/Review Appointment Fees

Our full private rate for a follow-up 15 minute review appointment is $140 (which comes down to $73 after your Medicare Rebate of $67.20 is refunded to you)
Our Health Care Card/Full-time Student/COVID rate for a review appointment is $120 (which comes down to $53 after your Medicare Rebate of $67.20 is refunded to you)
Our Pension rate for a review appointment is $100 (which comes down to $33 after your Medicare Rebate of $67.20 is refunded to you)

Do you Bulk Bill?

We don't bulk bill for appointments with our Rheumatologists. However, we do offer a once-a-week option for you to be seen by a Rheumatology Registrar (a doctor who is close to completing his/her advanced training to become a Rheumatologist). You can be seen by the Registrar, and Dr Peter Landsberg will also meet with you for part of that appointment in his role of supervising the Registrar and to check in on your management plan.

Do you offer Telehealth Appointments?

We definitely do offer Telehealth or online video consultation appointments. Especially in these times of COVID-19 disrupting our ability to set up face-to-face meetings for our immune-suppressed patients. But, we do very much prefer to see you in person for your first appointment.

We believe that this is critical to ensure that we are able to most accurately diagnose and map out the best management plan for your condition. Some things just can't be done well online and we pride ourselves on looking after you as best as we can.

After that initial appointment, once we have met with you and we understand you and your condition, we then feel confident that we can move to Telehealth appointments and offer optimal quality for your ongoing personal care plan.