Ankylosing spondylitis

Ankylosing spondylitis is a long-term (chronic) condition. The spine, or other parts of the body, become inflamed. Over time this can make part of the spine join up (fuse) and lose its flexibility, which is called ankylosis.

The condition usually starts to develop in teenagers or young adults. Most symptoms and diagnoses come in a person's 20s.

Doctors don't know exactly what causes ankylosing spondylitis. Studies have found a link between the condition and a gene called HLA-B27, but carrying this gene doesn't necessarily mean you will develop ankylosing spondylitis. It's estimated that 8% of people carry the HLA-B27 gene, and most of them do not have the condition.

Ankylosing spondylitis affects people in different ways, and the symptoms can come on slowly over several months or years.

The main symptoms include:

• arthritis, which causes pain, tenderness and swelling in the joints
• enthesitis, which is painful inflammation where a bone is joined to a tendon or ligament, commonly in the heel, ribs or elbow
• pain and swelling in other parts of the body, like the hips, knees and ribs
• fatigue, which means severe tiredness that doesn't improve with sleep or rest
• pain in your lower back in the early morning
• morning stiffness that lasts at least 30 minutes and then eases through the day or with activity
• pain that doesn't improve or gets worse with rest
• waking up regularly during the night because of the pain
• pain in the area around your buttocks

• you have lower back pain that has lasted more than 3 months
• you have morning stiffness that goes on for more than 30 mins and you are 40 or below
• you have back pain that gets better when you exercise and worse when you rest

Ankylosing spondylitis can be hard to diagnose because it develops slowly. Back pain is also fairly common among people in general, so the diagnosis is often delayed. There can be a delay before a person goes to a doctor, and then a further delay before they are referred to a specialist, called a Rheumatologist.

You should speak to your doctor if you have symptoms of ankylosing spondylitis. The doctor will usually ask:

• what symptoms you're experiencing
• when the symptoms started
• how long you've had symptoms for

Your doctor may also arrange blood tests to check for signs of inflammation, and x-rays of your lower back and pelvis.

A Rheumatologist is a specialist in conditions that affect the muscles and joints. They may carry out other tests, which can include:

• an x-ray
• a MRI scan
• an ultrasound scan
• genetic testing

There is no cure for ankylosing spondylitis, but treatment can help relieve the symptoms. It can also help delay or prevent the spine from fusing (joining up) and stiffening.

In most cases, treatment is a mix of:

• exercise
• physiotherapy
• medicine

Most people with ankylosing spondylitis won't need surgery. But if a joint becomes very damaged, joint replacement surgery may be recommended, and this can help improve pain and movement in that joint.

Keeping active can improve your posture and the range of movement in your spine. It can also stop your spine from becoming stiff and painful.

Physiotherapy is a key part of treating ankylosing spondylitis. A physiotherapist can explain which exercises are best for you, and can draw up an exercise programme that suits you.

Types of physiotherapy for ankylosing spondylitis include:

• a group exercise programme
• an individual exercise programme
• massage
• hydrotherapy (exercise in a warm swimming pool)

With hydrotherapy, the buoyancy of the water supports you and makes movement easier. The warmth can also help relax your muscles.

Some people prefer to swim or play sport to keep flexible. This is usually fine, although some daily stretching and exercise is also important.

Speak to your physiotherapist or rheumatologist if you're worried about taking up a new type of sport or exercise.

The National Ankylosing Spondylitis Society (NASS) has information about different types of exercise to help you manage your condition.

You may need painkillers to manage the condition, but not everyone needs them all the time. The painkillers you may be prescribed include:

• a non-steroidal anti-inflammatory drug (NSAID)
• paracetamol

Some people may be given a type of medicine called biologics. These are used if painkillers and exercise don't help.

Examples of biologics used are:

• Anti TNF medicine (Adalimumab, Etanercept, Golimumab)
• Monoclonal Antibody Treatment (Secukinumab, Ixekizumab)
• JAK Inhibitors (Baricitinib, Updacitinib)

All these medicines work by reducing inflammation.

Corticosteroids have a strong anti-inflammatory effect, and in ankylosing spondylitis they can be given as tablets or as injections.

If one particular joint is inflamed, the doctor can inject the corticosteroid straight into that joint. You will then need to rest the joint for up to 48 hours after the injection.

Doctors may prescribe DMARDs for ankylosing spondylitis if you have pain and inflammation in joints away from the spine, such as the hands, knees and feet. These medicines don't work on the spine itself.

There's no cure for ankylosing spondylitis, but most people with it can live a fairly normal life, and they need to change very little in their daily activities.

As time goes on, ankylosing spondylitis can affect your ability to work. Most people can stay at work, though, with a few changes. These help with your posture when you stand or sit for long periods, and they also help with fatigue.

In practice, this could mean adjusting your work station or making sure you take regular breaks. You should talk to your employer about this.

Ankylosing spondylitis can affect many parts of the body. It can make day-to-day life harder, and it may lead to other health conditions too.

Some of the complications linked to ankylosing spondylitis are:

• less flexibility in the spine
• joint damage, leading to pain and stiffness
• osteoporosis
• spinal fractures
• iritis, which means painful eyes, swelling and sensitivity to light
• blurry or cloudy vision, and redness in part of the eye
• cauda equina syndrome

If you have the condition, your risk of developing cardiovascular disease (CVD) may also be higher.