Axial spondyloarthritis

This long-term condition is driven by the immune system, which attacks three places: the spine, the sacroiliac joints where the spine meets the pelvis, and the points at which ligaments and tendons are rooted in bone. As the years pass, the inflammation can lead the body to lay down new bone, and that is what may make the spine stiff. Nobody knows exactly what starts it, but genes count for a lot. Most people with the condition carry a gene marker called HLA-B27, yet plenty of people carry it and never develop the condition, so the marker explains only part of it.

It usually begins in early adult life and can run in families. It has known ties with psoriasis, with inflammatory bowel disease, and with reactive arthritis and psoriatic arthritis, members of the same family of conditions.

What gives it away most is how the back pain behaves. The usual pattern:

• Pain in the back or buttocks that built up slowly, often starting before 45
• Pain and stiffness that are worse in the morning and after rest, and better once you get moving
• Mornings stiff for longer than half an hour
• Pain that can wake you once the night is half over
• At times, pain in other joints, in the heels or across the front of the chest (much like the pain of costochondritis), or an inflamed eye

The diagnosis comes from your history, the examination, blood tests and scans taken together. The story of inflammatory back pain is often what first raises the question, and scans of the spine and pelvis help to answer it. A good-quality MRI scan matters a great deal in axial spondyloarthritis, since it can show inflammation early, before ordinary X-rays show any change. Dr Borukhson is happy to arrange the right MRI, or to refer you for it, so that you are not left waiting long for an answer.

Ultrasound can add to the picture by showing inflammation where tendons fix to the bone, which is common in this group of conditions. Point-of-care ultrasound is part of the consultation with Dr Borukhson, so the areas in question can often be scanned on the day of your visit. The ultrasound clinic page explains the scan.

Calming the inflammation, easing the pain and stiffness, and keeping you mobile and upright for the long term are what treatment is for. A regular programme of exercise and movement is a large part of it, with medicines on top where they are needed, and the plan is worked out with you. Anti-inflammatory tablets (NSAIDs) usually come first and often settle the pain and stiffness in the spine well, though they are prescribed with some care because they can affect the stomach and the kidneys.

If the inflammation goes on despite them, biologic medicines that act on the immune signals driving it, among them medicines that block TNF or the action of a messenger called interleukin-17, are an effective option, given under a specialist's eye; they can weaken the body's defences against infection, so you are screened before the first dose. Standard disease-modifying tablets such as sulfasalazine, methotrexate and leflunomide, which need blood tests to monitor them, can help joints away from the spine but leave the inflammation in the spine itself untouched. Every treatment is reviewed as time goes on, and because the condition lasts, keeping in regular touch with a specialist helps to hold it in check.

Each day, movement does you more good than anything else. Regular activity that works on your posture, flexibility and core strength helps to keep you mobile and loosen the stiffness, and guidance from a physiotherapist who knows the condition helps many people. A little stretching every day, a good position in bed and some thought about how you sit at work all build up over the years.

Staying off cigarettes counts for more than usual, because smoking goes with faster progression and a weaker response to treatment.

As a long-lasting inflammatory condition, axial spondyloarthritis brings a somewhat greater risk of heart and circulation problems over time, mainly a greater chance of a heart attack or a stroke, though the evidence for this is less firm than for rheumatoid arthritis. You can do a lot about that risk. Not smoking, a healthy weight, a good diet, regular activity and control of the inflammation all help to lower it, as do regular checks of blood pressure, cholesterol and blood sugar at your GP surgery, which find what needs treating. For the checks to ask for, turn to our guide to inflammation and your heart.

In a far smaller group, and usually only after many years, the heart itself can become inflamed. The parts at risk are the aortic root and valve, at the point where the aorta, the body's largest artery, leaves the heart, and the electrical pathways that set the heart's rhythm. Most people never have this, and routine heart tests to look for it are not recommended; heart tests are done when a symptom, or something found on examination, prompts them. A blackout, and palpitations still going on that will not settle, or that arrive with chest pain, breathlessness, faintness or a faint, are 999 or A&E emergencies; short of those and of the other signs in the first list, new breathlessness or palpitations need an assessment the same day, as the seek-help section sets out. When it does happen, a heart specialist shares the care.

Most people do well over the long run with today's treatment and exercise kept up as a habit, staying active and in work. Flares can come and go, and pacing your activity and keeping your specialist informed helps you get ahead of them.

At your routine review you can raise most changes in your back and joints. The ones that cannot wait are grouped in the lists below, the gravest first, and the paragraph after them gives the ones for an appointment within days.

Treat any of these as a 999 or A&E emergency: call 999 and do not drive yourself to A&E.

• Severe illness with suspected sepsis: a high fever with shaking, confusion, rapid breathing, or feeling dramatically worse over hours
• With a fever or feeling unwell, a rash that does not fade when you press it, a stiff neck with eyes that cannot bear bright light, or skin, lips or tongue turning blue, grey, pale or blotchy, since these can be signs of meningitis or sepsis; on black or brown skin the rash and the change of colour may be easier to see on the palms of the hands or the soles of the feet
• Numbness or tingling around the back passage, genitals or inner thighs, new difficulty passing urine or controlling your bladder or bowels, a change in feeling during sex, or pain, tingling, weakness or numbness in both legs, since these can mean pressure on the nerves at the base of the spine, which needs emergency treatment
• Clumsy or weak hands that came on suddenly, or new trouble with walking, since the spinal cord in the neck can be squeezed, and axial spondyloarthritis can reach the neck
• Back pain that began after a serious accident, such as a car crash or a fall from a height, or that comes with chest pain
• Chest pain that is crushing, tight or like a pressure, that spreads to an arm, the jaw, the neck, the stomach or the back, that comes with breathlessness, sweating, feeling sick or feeling light-headed, or that came on suddenly and does not go away
• Breathlessness that is severe, with gasping, choking or no breath to get words out; or coughing up blood
• Palpitations happening now that do not stop, or that come with chest pain, breathlessness, feeling faint or fainting, since a heart whose muscle or rhythm is affected has to be checked at once
• A blackout, since the heart's rhythm can be disturbed when axial spondyloarthritis reaches it
• Sudden weakness or numbness on one side, a drooping face or difficulty speaking, a sudden severe headache, sudden confusion or a seizure, or sudden loss of vision, any of which can be a stroke, even if it stops after a short time, and axial spondyloarthritis makes a stroke somewhat likelier
• An eye that suddenly and completely loses its sight
• Vomiting blood, or bleeding from the back passage that is heavy or will not stop, most of all with faintness, confusion or pain in the abdomen, or vomit that is black or dark brown, since anti-inflammatory tablets, which usually come first for the pain and stiffness in the spine, can make the stomach bleed
• Lips, mouth, throat or tongue that suddenly swell, a throat that feels tight, very fast breathing or a struggle to breathe or to swallow, skin, tongue or lips turning blue, grey or pale (on black or brown skin this may be easier to see on the palms of the hands or the soles of the feet), becoming suddenly very confused, drowsy or dizzy, or fainting and not being able to be woken, since this can be a severe allergic reaction, anaphylaxis, which can follow a dose of any medicine

Any of these needs an assessment that is urgent, on the same day, from your GP, your rheumatology team or NHS 111:

• A fever, or feeling generally unwell, on immunosuppressant, biologic or steroid treatment, since an infection has to be treated early
• A fever, feeling hot, cold or shivery, or generally unwell, with the back pain, since an infection in the spine has to be found the same day
• New pain in the spine after a fall or knock, however small, or back or neck pain that is severe and came on suddenly or is quickly getting worse, since a spine stiffened by the condition breaks more easily than other spines and a fracture has to be found that day, rather than the pain being put down to a flare; after a serious accident, pain in the neck or the back belongs to the first list
• New weakness, heaviness, numbness or pins and needles in a leg, or in one or both arms or hands, building over hours or days with pain in the neck, the back or the limb, since a nerve where it leaves the spine can be pinched, or the spinal cord pressed; a limb that loses its strength or feeling in a moment, with nothing painful to account for it, can be a stroke, a 999 or A&E emergency, and weakness or numbness in both legs, or the bladder, bowel or saddle signs, are 999 or A&E emergencies too, as the first list says
• A joint that is hot and swollen, with a fever or feeling unwell, since an infected joint has to be ruled out at once, at A&E or through NHS 111
• A joint that has become hot and very swollen suddenly, or is worsening quickly, even without a fever, since an infected joint does not always announce itself with one; a joint that will take no weight at all, or that cannot be moved, is a 999 or A&E emergency, whether or not there is a fever
• New chest pain, new palpitations, or breathlessness that is new or getting worse, since in a few people, usually after many years, the condition reaches the heart's main valve or the wiring that keeps it in rhythm; palpitations happening now that do not stop, or that come with chest pain, breathlessness, feeling faint or fainting, belong to the first list, and so does chest pain that arrives with back pain that is new, or unlike your usual back pain
• A new red, painful eye, or sight that has blurred, dimmed or changed, which needs an eye casualty or urgent eye clinic the same day, as does an eye that light hurts, since axial spondyloarthritis can lead to uveitis, which inflames part of the eye and needs prompt treatment to protect the sight; our uveitis guide explains
• Black or dark red stools, on anti-inflammatory tablets, since a bleed in the stomach or gut has to be found that day
• Being near someone with measles, chickenpox or shingles, while you take a medicine that weakens the immune system, since measles and chickenpox can be dangerous when the immune system is weakened, and you can catch chickenpox from someone with shingles if you have never had chickenpox; NHS 111 can tell you what to do that day

If a flare is not settling, a joint has newly swollen but is not hot, or pain and stiffness keep creeping up, ask your rheumatology team or GP for an appointment within days rather than waiting for the next review. If you cannot tell how urgent something is, asking is never a mistake.

It is common for inflammatory back pain to go unrecognised for years. In the UK it takes about eight and a half years on average for axial spondyloarthritis to be diagnosed, and the wait has a cost: untreated, the condition can leave damage in the spine that cannot be undone. When it is recognised early, treatment and exercise start earlier, which helps to keep you moving and living well. So it is worth seeing your GP, or booking a specialist directly, rather than putting it off. Back pain that has gone on for a long time and eases with activity or began before 45 is worth a specialist's look.

Is my back pain the inflammatory kind?

Its behaviour is the guide. Pain in the back or buttocks that crept on before the age of 45, is worse for resting and better for moving, and can wake you in the second half of the night suggests inflammation, all the more if the stiffness on waking takes over half an hour to ease. If that sounds like yours, a specialist assessment, through your GP or booked directly, is worth having before the pain is put down to strain.

Will I need an MRI scan, and how is one arranged?

MRI is at the heart of the diagnosis, because it can pick up inflammation in the spine and pelvis at an early stage, before ordinary X-rays change. Dr Borukhson can arrange the right scan, or refer you for it, so that the wait for a diagnosis is kept short. The places where tendons fix to the bone can also be scanned with ultrasound at the consultation itself.

Does exercise really matter?

It matters a great deal. A regular programme of exercise and movement is part of the treatment, working with any medicines to keep you mobile and upright over the years. It is no add-on, and it is planned with you as part of everything else.

I have had back pain for years. Is it too late to be assessed?

No. In the UK the diagnosis takes about eight and a half years to arrive on average, so a long history is very common. Treatment can still settle the inflammation, ease the pain and stiffness and help keep you moving, and the earlier the condition is named, the earlier that can begin.

What will treatment look like over the years?

Anti-inflammatory tablets usually come first. If the inflammation carries on, biologic medicines, which act on the immune signals behind it, are an effective option, and you are screened before starting one. When joints away from the spine are inflamed, standard disease-modifying tablets are sometimes used, sulfasalazine, methotrexate or leflunomide among them, though they do nothing for the inflammation in the spine itself. Because the condition is long-lasting, regular reviews with a specialist keep the treatment on course and let it change when it needs to.