Living with
Ankylosing Spondylitis

What is ankylosing spondylitis?

Ankylosing spondylitis is a type of arthritis that causes inflammation in the joints in the lower part of the spine. It is a common cause of backpain.

Eventually the inflammation leads to the vertebra (the bones in the spine) fusing, creating a deformity of posture and, sometimes when left untreated, chronic pain.

While you cannot undo the damage to your spine caused by ankylosing spondylitis, treatments can lessen your symptoms and slow the progression of the disease.

How do you know you have ankylosing spondylitis?

Symptoms of ankylosing spondylitis usually develop gradually, over several months or years, and tend to vary over time. Early signs and symptoms of ankylosing spondylitis include lower backpain and stiffness, especially in the morning and during the night, which might wake you from sleep. You may also experience pain in the large joints, such as the hips and shoulders.

Other symptoms may include:

• Stiffness in the lower back or hips, especially in the morning or on waking
• Poor posture/stooped shoulders/hunched-over posture
• Loss of mobility in the lower back
• Neck pain and fatigue

And because ankylosing spondylitis involves inflammation, it can also cause more general symptoms and affect other parts of the body.

Non-joint symptoms can include:

• Fatigue
• Loss of appetite
• Fever
• Unexplained weight loss
• Tendonitis of the Achille’s heel
• Enthesitis (painful inflammation where a bone is joined to a tendon) at the top of the shin or under the heel
• Inflammation in the bowel, including irritable bowel syndrome (IBS), Crohn’s disease and ulcerative colitis
• Inflammation of the heart and heart valves
• Inflammation of the eye – uveitis or iritis
• Reduced lung function from pulmonary fibrosis.

When to see your doctor:

Visit your doctor or healthcare provider if you have lower back pain that has been developing slowly over time and which is worse in the morning or when you are asleep at night, particularly if this pain improves with exercise but is worse at rest.

What causes ankylosing spondylitis?

There is no known specific cause of ankylosing spondylitis. General factors that increase your risk of developing ankylosing spondylitis are:

• Sex: Men are more likely to develop ankylosing spondylitis than women.
• Age: Ankylosing spondylitis usually first occurs in late adolescence or early adulthood.
• Genetics/Having a family history: Ankylosing spondylitis seems to run in families. Most affected individuals have the HLA-B27 gene; however, many other people who also have this gene never develop ankylosing spondylitis.

Living and managing

Consider these lifestyle changes to manage your ankylosing spondylitis:

• Keep physically active: Exercise helps stabilise joints by strengthening supportive muscles. Exercise also lessens pain and improves posture.
  Make sure you do a mix of aerobic exercise and strength-building exercises if you have ankylosing spondylitis. Aerobic exercise improves heart and respiratory health, in addition to reducing pain. Consider low-impact aerobic activities such as swimming, walking, or water aerobics, which limit the stress placed on joints. Strength-building exercises, on the other hand, build muscles to support your joints. Try lifting small weights, using a resistance band or exercise ball and doing push-ups.
  Light, gentle stretching is also particularly beneficial if you have ankylosing spondylitis, as it helps keep joints flexible and reduces pain.
• Maintain good posture: Standing up straight and trying to maintain good posture is good for your back muscles and can reduce symptoms of ankylosing spondylitis.
• Eat well for good bone health: While there is no evidence that one specific diet will benefit you if you have ankylosing spondylitis, it is recommended that you eat a healthy, balanced diet to stay generally healthy.
  Be sure to include lots of foods rich in calcium in your diet. Calcium is a mineral found in dairy products, dark green leafy vegetables like spinach and broccoli, the bones of canned oily fish and in soy products like tofu. Calcium is essential for strong, healthy bones. Men and women between the ages of 18-50 years need 1 000 milligrams of calcium per day, while women older than 50 years and men older than 70 years need 1 200 milligrams per day.
  See Cooking from the Heart for healthy recipes and to find out more about how to incorporate more foods that are high in calcium into your diet.
• Maintain a healthy weight: Exercise and eating well will help you maintain a healthy weight which will reduce the extra pressure placed on your joints; thereby, lowering your risk for developing any type of arthritis.
• Quit smoking: Smoking is bad for your health in general, but the negative effects that it causes, such as breathing difficulties, can be made worse if you have ankylosing spondylitis. Talk to your doctor about ways to quit.
• Limit your alcohol consumption: Do not drink more than two alcoholic beverages per day, as any more than this intake can speed up bone loss and reduces your body’s ability to absorb calcium, especially if you drink during a meal.
• Cut down on caffeine: Caffeine may increase calcium loss in the urine. However, moderate caffeine use (about two cups of coffee a day) is probably not harmful if your diet contains enough calcium.
• Get plenty of vitamin D: Vitamin D improves your body’s ability to absorb calcium. In South Africa, it is quite possible to get enough vitamin D from sunlight; however, good dietary sources of the vitamin include eggs and fish (salmon and canned tuna, for example).
• Apply heat or cold: These can be used to relieve pain and swelling in your joints. Heat can help relax muscles; while cold can relieve muscle aches after exercise and decrease the chance of having muscle spasms.
• Do physical therapy: This is an important part of managing ankylosing spondylitis. A physiotherapist can show you exercises that you can do that maintain strength and mobility/flexibility in your spinal joints, and which can help you maintain good posture.

What treatment is available for ankylosing spondylitis?

If you have ankylosing spondylitis, your doctor will probably prescribe you a non-steroidal anti-inflammatory (NSAID) to reduce the inflammation and relieve the pain and stiffness in your joints.
NSAIDs can cause stomach, cardiovascular and bleeding problems, as well as liver and kidney damage – so take care to use these medications correctly and only as indicated.

If you feel NSAIDs are not working to manage your symptoms of ankylosing spondylitis, then your doctor may consider prescribing you biological medications, like a tumour necrosis factor (TNF) blocker or interleukin-17 (IL-17) blocker. TNF and IL-17 are proteins that play pivotal roles in producing inflammation in the body. By blocking these proteins, you can therefore reduce inflammation. There are five TNF blockers that are used to treat ankylosing spondylitis: adalimumab, certolizumab pegol, etanercept, golimumab and infliximab; while there are IL-17 blockers used in the treatment of ankylosing spondylitis.

Surgery is rarely needed for ankylosing spondylitis but can be recommended by your doctor in select circumstances.

What are the complications associated with ankylosing spondylitis?

Complications of ankylosing spondylitis include:

• Bone deformities: In severe forms of the disease, new bone forms as part of the body’s attempt to heal damaged bone structures. The new bone eventually grows between vertebrae, fusing them together. Fused parts of your spine become stiff and inflexible.
• Compression fractures: Ankylosing spondylitis can cause some people’s bones to thin. This weakens the vertebrae, which can then crumble, causing a stooped or hunched-over posture. These fractures can also injure the spinal cord and its associated spinal nerves causing peripheral neuropathy.
• Eye inflammation (uveitis):Uveitis, typified by rapid-onset eye pain, sensitivity to light and blurred vision, is a common complication of ankylosing spondylosis.
  See your doctor immediately if you develop these ocular symptoms.
• Heart problems: Ankylosing spondylitis can enlarge your aorta (the largest artery in your body), a condition known as ‘aoritis’. This can cause aortic valve disease.
  Other heart disease like cardiomyopathy and coronary artery disease are also associated with ankylosing spondylitis.
• Cauda equina syndrome: This is a rare complication of ankylosing spondylitis that occurs when the nerves at the bottom of your spine become compressed. It can cause pain or numbness in your lower back and buttocks, weakness in your legs (which can affect your ability to walk) and, if severe, urinary incontinence or bowel incontinence (when you cannot control when you void your bladder or bowels).
• Amyloidosis: If you have ankylosing spondylitis you may develop the very rare condition, amyloidosis, where the protein, amyloid, accumulates in tissues like the heart, lung or liver. This can cause a wide range of symptoms depending on which organ(s) become affected.