Ankylosing spondylitis

Also called Axial spondyloarthritis, AxSpA, AS

Inflammatory arthritis of the spine. The average delay to diagnosis is eight and a half years, mostly spent being treated for back pain.

What it is

Axial spondyloarthritis is inflammatory arthritis affecting the spine and the joints where the spine meets the pelvis. Around 1 in 200 adults in the UK have it.

The average delay from first symptoms to diagnosis is around eight and a half years. That is not a rounding error, it is nearly a decade of a young person being treated for mechanical back pain, told to rest, and sometimes told it is in their head.

The distinguishing pattern is straightforward once known. Inflammatory back pain improves with exercise and worsens with rest. Mechanical back pain does the opposite. Anybody under 45 with back pain lasting over three months that is worse in the morning and better with movement should be assessed for it.

Signs you might notice

Back and buttock pain lasting more than three months, starting before 45.

Morning stiffness lasting more than 30 minutes.

Pain that wakes you in the second half of the night and improves when you get up and move.

Improvement with exercise, not with rest.

Fatigue, and sometimes painful red eyes, which is uveitis and needs same-day treatment.

Associated psoriasis or inflammatory bowel disease in a proportion of people.

How it can affect day-to-day life

Without treatment, inflammation can lead to bones fusing, and posture and mobility are permanently affected. Early treatment prevents that, which is what makes the diagnostic delay so costly.

Fatigue is rated by patients as one of the most disabling symptoms and gets little attention.

The condition is invisible, so employers and benefits assessments frequently do not credit it.

Uveitis is the complication people are least warned about. A painful red eye with light sensitivity in somebody with AS is an ophthalmic emergency.

Supporting someone well

Exercise daily, particularly stretching and posture work. This is treatment, not general advice, and it is the single most effective self-management tool.

Ask for referral to rheumatology, and use the phrase inflammatory back pain.

Ask about biologic treatment if anti-inflammatories are not controlling it. These drugs changed the outlook substantially.

Get a painful red eye seen the same day.

Do not stop moving during a flare. Reduce, do not stop.

Ask for a hydrotherapy referral, which many people find the most useful thing offered.

Where to get help

A GP should refer to rheumatology for suspected axial spondyloarthritis.

The National Axial Spondyloarthritis Society run a helpline and produce exercise programmes designed for the condition.

A painful red eye is an emergency: go to eye casualty.