Ankylosing spondylitis is a form of inflammatory arthritis that affects the spine and sacroiliac joints of the lower back. Symptoms include chronic back pain and stiffness. In severe cases, the affected joints in the spine may become fused and inflexible. There may also be deformity or curving of the spine.
Ankylosing spondylitis can cause inflammation, pain and stiffness in other parts of the body too, such as shoulders, hips, ribs, heels, hands and feet. The degree of pain and inflammation will vary from person to person and range from mild to severe. Sometimes the eyes are affected as well (known as iritis or uveitis).
The condition can occur at any age but is most likely to develop between the ages of 13 and 35 years and is uncommon after the age of 40. It affects men almost three times more often than women.
Genetic factors may cause ankylosing spondylitis. About half the risk is related to a gene called HLA-B27, although the gene is also present in healthy people who don’t have the condition. There is also a genetic link between ankylosing spondylitis and Crohn’s disease or inflammation of the bowel.
There is no cure but treatment can minimise symptoms and prevent complications.
How can I manage my ankylosing spondylitis?
Although there is no cure for ankylosing spondylitis, early diagnosis and good management can slow the progression of the disease, control inflammation and reduce damage to the spine. A number of treatments can relieve pain and stiffness, but non-medication approaches are just as important to help you live an active and productive life. Talk to your rheumatologist and healthcare team to help you decide on the best form of treatment for you.
Medicines used for ankylosing spondylitis include:
- pain relievers such as paracetamol.
- steroid injections – used as a short-term treatment for flare-ups.
- non-steroidal anti-inflammatory drugs (NSAIDS) such as diclofenac, ibuprofen and naproxen relieve pain and stiffness by reducing inflammation but may have side-effects.
- biologic medicines, known as ‘disease-modifying drugs’ can be used to treat severe ankylosing spondylitis to reduce pain, stiffness and tender or swollen joints, and improve function. They are given by injection and include adalimumab, etanercept, golimumab and infliximab.
People with ankylosing spondylitis tend to bend forwards and stoop but keeping the spine straight is important to prevent complications. When standing, keep your bodyweight balanced and even on both feet with shoulders relaxed (back and down). Keep the back of your neck straight and long. Do not stand still for too long and try to maintain this tall, relaxed posture even when moving. A firm mattress may be more comfortable than a soft one.
Exercise is vital to maintain movement of the spine and strengthen back and neck muscles. Swimming is often recommended as the water supports your weight, and stretching exercises will help reduce stiffness and increase flexibility. Ask a physiotherapist to suggest exercises that are right for you and try to do them every day. Be careful not to overdo it though – periods of rest and relaxation are also important.
Physiotherapy, occupational therapy and hydrotherapy can all help to keep your muscles strong and your spine flexible. An orthotist or podiatrist will be able to suggest aids to good posture.
Learn how to relax muscles and get rid of tension. This can help decrease pain, and improve sleep and energy levels. Plan and pace your daily activities to avoid exhaustion.
Ankylosing spondylitis can reduce the movement of your rib cage when you breathe, which makes smoking particularly damaging. People with any form of inflammatory arthritis are also at greater risk of heart disease, and smoking further increases this risk.
There is no scientific evidence that diet has any specific effect on ankylosing spondylitis, but a balanced diet is important to maintain general health and energy levels and to prevent osteoporosis.
Watch your eyes
About 30 percent of people with ankylosing spondylitis will develop iritis or inflammation of the eyes. The eye may feel irritated and painful. You could also have headaches, blurred vision or sensitivity to light. See an optometrist or ophthalmologist as soon as possible if you think you have iritis.
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Will I see a rheumatology nurse or a rheumatologist at my specialist appointment?
Whether or not you see the rheumatology nurse or the rheumatologist at your specialist appointment depends on your clinic.
Sometimes you will see both, and sometimes one or the other. This will vary in Rheumatology clinics across the country and will often depend on the reason for your appointment. You can ask your nurse directly how often and in what circumstances you are likely to see the Rheumatologist.
Rheumatology nurses are generally very skilled, and seeing the Rheumatology nurse can be an opportunity to discuss your many different concerns, including lifestyle management of your condition. If you have concerns/questions that your nurse can not answer immediately, they will discuss this with the specialist and then get back to you.
There is a nationwide shortage of rheumatologists; many of you will have noticed this, with some localities being without a rheumatologist for several months.
Making sure you are well connected to the other people in your healthcare team can offer some reassurance and extra support to manage your condition and medicines while you are waiting to see the rheumatologist.