Ankylosing Spondylitis- information for patients

 

 

Ankylosing spondylitis (AS) is an inflammatory condition that affects the joints of the spine. Spondylitis simply means inflammation of the spine.

As the inflammation dies down, new bone forms replacing the more flexible tendons and ligaments between the vertebrae. Eventually the individual bones of the spine may link up (fuse) resulting in stiffening of the spine (ankylosis).

 

Ankylosing spondylitis symptoms

In the early stages, ankylosing spondylitis is likely to cause low backache and stiffness, and pain in the buttocks and sometimes the backs of the thighs (like sciatica).

You may first notice symptoms after some unusual strain, so the condition is often mistaken for common backache.

Pain in the neck, shoulders and hips, or in the thigh, may follow. Some people have pain, stiffness and swelling in the knees or ankles, or in the smaller joints of the hands and feet. For some people, especially children, the first signs may be in the hip or leg and not in the back at all.

Other possible symptoms include:

  • tenderness at the heel bone – making it uncomfortable to stand on a hard floor
  • tenderness at the bone of your 'seat' (ischium) – making sitting uncomfortable
  • chest pain or a 'strapped-in' feeling – which comes from the joints between the ribs and the breastbone
  • inflammation of the iris – see your doctor immediately if you suddenly develop pain or redness in an eye
  • tiredness – caused by the activity of the disease, or by anaemia, or sometimes by depression and frustration associated with the condition.

Other conditions are sometimes associated with AS – for example, inflammation of the bowel (colitis) and the skin condition psoriasis.

Who gets ankylosing spondylitis?

Ankylosing spondylitis affects 2–3 times as many men as women. It's most likely to start in your 20s or 30s.

The genes you inherit from your parents may make you more or less likely to develop AS, but the disease isn't directly inherited. AS isn't contagious and you can't catch it from someone else who has it.

Most people with ankylosing spondylitis have a gene called HLA-B27, which can be detected by a blood test, but having this doesn't mean you will get AS. Even in families where somebody has AS, a brother or sister may have the HLA-B27 gene and never get the disease.

Psoriatic arthritis, colitic arthritis or reactive arthritis may occur with AS or sometimes before it, and childhood arthritis can sometimes develop into AS later on. The link between these and other diseases has revealed some of the genetic factors that are involved.

How does ankylosing spondylitis progress?

Ankylosing spondylitis is quite variable and difficult to predict. In its early stages it can cause considerable pain, although treatment will help to relieve this.

You may have phases when the symptoms become worse, or you may have relatively mild aches and pains coming and going over a period of months. You may at times feel generally unwell, lose weight or tire easily. Often the condition then settles down again and the symptoms gradually improve.

After several months, the back may stiffen, usually lower down. The disease may then die out, causing no further trouble. A stiffened back is often painless and doesn’t interfere with physical activity because the upper part of the spine, the neck, hips and limbs can remain quite mobile.

Rarely, there may be complications affecting the heart, lungs and nervous system. Less than 1 in 100 AS patients have these problems, and all these complications can be treated.

How is ankylosing spondylitis diagnosed?

Most back pain isn't caused by ankylosing spondylitis. However, the symptoms of AS, especially in its early stages, are often very similar to the more common back problems. Because of this, it can take some time before AS is diagnosed – it may even be misdiagnosed initially.

What tests are there?

A blood test for inflammation may show an abnormal result in the early stages. There are three commonly used tests for inflammation.

You may have one or more of these tests:

  • CRP (C-reactive protein)
  • ESR (erythrocyte sedimentation rate)
  • PV (plasma viscosity).

Another blood test can confirm whether you have the HLA-B27 gene. Most people with ankylosing spondylitis test positive for HLA-B27, but so do some healthy people. A positive test may point to AS but it won't confirm the diagnosis. 

X-rays sometimes help to confirm the diagnosis, though they may show nothing in the early stages of the disease. As the disease progresses new bone develops between the vertebrae, which can lead to stiffening of the spine. Any new bone will be visible in x-ray images. 

Ankylosing spondylitis treatments

There is no cure for ankylosing spondylitis at present, but treatments (that is drugs, physiotherapy and surgery) can relieve the symptoms, help to keep the spine mobile, and allow you to live a normal life. Exercise and close attention to your posture are just as important as medical treatments in reducing the impact of the disease.

Ankylosing spondylitis drugs

Painkillers (analgesics) and anti-inflammatory drugs will relieve pain, which will help you to get a good night's sleep. They can also ease stiffness, making it easier to exercise. You will probably need tablets during bad patches and you may need a maintenance dose over a longer period.

Slow-release anti-inflammatory drugs remain effective over a longer period, so they may help with both night-time pain and morning stiffness. Pain-relieving tablets can sometimes irritate the stomach, but this should be less of a problem if you take them with food.

Some drugs are called disease-modifying: they aren't very effective for the spinal symptoms, nor do they have an immediate impact on the disease, but ultimately they can make a big difference to symptoms in your limb joints. Sulfasalazine and methotrexate are examples of disease-modifying drugs.

Some drugs are given by injection:

  • Biological therapies are given either as an infusion over a few hours or as a twice-weekly injection. You may also feel early benefit with these drugs. Examples are etanercept and adalimumab.
  • Bisphosphonates are given in short bursts over a period of a few weeks – an example is pamidronate. You may get pain relief in the spine soon after receiving this drug.

Physical therapies

Physiotherapy is a very important part of the treatment for ankylosing spondylitis. A physiotherapist can put together a programme of exercise that will increase your muscle strength and help to maintain mobility in your spine and other joints.

It's especially important to exercise your hip to avoid it stiffening in a bent position.

Surgery

Occasionally, a new hip or knee joint may be needed if these joints are badly affected. Surgery may be used to straighten a bent spine, but this is rare. Most people with ankylosing spondylitis don't need surgery.

Self-help and daily living

Medical treatments can help to control ankylosing spondylitis, and the disease will tend to become less active as you get older. However, ongoing attention to posture, mobility and exercise are needed to minimize the long-term effects of AS .

This section also covers: exercise, pain management, complementary therapies, supports and gadgets, sleep, posture, sex and pregnancy, work, driving and life insurance.

Exercise

Bed rest isn't recommended as this can speed up the stiffening of the spine. Exercises for your back, chest and limbs will keep them supple. Do at least some exercises each day. Many people find these are especially good for easing morning stiffness.

 

Daily exercise programme

1. Standing with your heels and backside against a wall, push your head back towards the wall and hold for the count of 5, then relax. Repeat about 10 times if possible.

2. Stand in an open space with your feet apart. Place your hands on your hips. Turn from the waist to look behind you. Repeat to the other side, 5 times each side.

3. Lying on your back, knees bent, feet flat on the ground:

a) Put your hands on your ribs at the sides of your chest. Breathe in deeply through your nose and out through your mouth, pushing your ribs out against your hands as you breathe in (about 10 times). Remember, it is as important to breathe out fully as it is to breathe in deeply.

b) Put your hands on the upper part of the front of your chest. Breathe in deeply through your nose and then breathe out as far as you can through your mouth. Push your ribs up against your hands as you breathe in – again about 10 times.

4. Lying on your front, looking straight ahead, hands by your sides (if necessary you may put a pillow under your chest in order to get comfortable):

a) Raise one leg off the ground keeping your knee straight – about 5 times for each leg. It helps to have the opposite arm stretched out in front of you.

b) Raise your head and shoulders off the ground as high as you can – about 10 times.

5. Kneeling on the floor on all fours, stretch alternate arms and legs out parallel with the floor and hold for the count of 10. Lower and then repeat with the other arm and leg, 5 times each side.

Contact sports (such as rugby or basketball) are best avoided as the joints and spine can be injured, but there are plenty of other activities that are suitable. Swimming is one of the best forms of exercise as it uses all muscles and joints without jarring them.

Pain management

Heat will help to relieve pain. Try a hot bath before going to bed, a hot-water bottle or an electric blanket for night-time pain. A hot bath or shower also helps to ease morning stiffness.

Complementary therapies

Acupuncture won’t have any effect on the way the disease progresses but it can help to relieve pain.

Manipulation is not helpful for ankylosing spondylitis, and manipulation of the spine, especially the neck, can be harmful.

Supports, aids and gadgets

Corsets and braces are hardly ever helpful and can make ankylosing spondylitis worse. It’s better to develop your own muscles to maintain a good posture. Very occasionally some form of support may be necessary, for example after a back injury – discuss this with a doctor who is experienced in treating AS.

Sleep

A firm bed will be more comfortable than one that is too yielding. If need be, try placing a piece of board between the mattress and the bed frame. Even when the painful active phase of ankylosing spondylitis has passed, it’s important to keep a firm bed in order to prevent any tendency for spinal curvature.

Posture

Untreated ankylosing spondylitis causes increased bending of the spine, so keep as straight and erect as possible. Hardback, upright chairs or straight-backed rocking chairs are better for your posture than low, soft, upholstered chairs.

Don’t stoop or stretch across a desk or bench. Make sure your seat is at the proper height and don’t sit in one position for too long without moving your back.

Some doctors suggest lying flat on your front (prone lying) for a short time in the morning and evening to help prevent the spine stiffening in a bent position. Lie face down on a firm bed or the floor with a pillow under your chest if you need it. It might be easier after a warm bath. Try this for a few minutes at a time to begin with, and as it becomes easier try to build up to 20 minutes at a time. Not everyone can manage to lie flat like this, especially if the disease is more advanced. If you find it difficult, ask your doctor or physiotherapist for advice.

 

Sex and pregnancy

Sex may be painful if you have inflammation in the sacroiliac joints or lumbar spine, and lack of mobility in the hips can also be a problem. Try taking some pain relief tablets beforehand and experimenting with different positions. For more information on how arthritis and related conditions can affect relationships and sex, click here.

Ankylosing spondylitis can also make you feel tired so it’s important that your partner understands how your condition affects you. People with AS tell us that good communication is the key to preserving an active sex life and that counselling can sometimes be helpful for both partners.

It’s fine to use the contraceptive pill if you have AS, but you should mention this to your doctor.

AS doesn’t die down during pregnancy as some types of arthritis do. Usually pregnancy doesn’t present any special problems – either for the mother or the baby. Occasionally a Caesarean birth may be necessary if the mother’s hip joints have become stiff. Click here to find out more about how arthritis and related conditions may affect your pregnancy.

You may be concerned about taking your medication during pregnancy, and it’s sensible to take as few tablets as possible – especially during the first 3 months. However, the tablets commonly used to treat AS are highly unlikely to harm an unborn baby.

If you have AS the chances of your children developing it are small – not more than 1 in 50. Parents with AS sometimes ask if their children should have the HLA-B27 test – to see whether they might develop the disease in the future. However, there’s no way of knowing whether a child will develop AS even if they test positive.

Work

Ankylosing spondylitis can cause difficulties at work, especially if you have a physically demanding job. You may need to take some time off when the disease is very active. Excessive tiredness may make combining a work and home life very difficult.

Seek advice if your job involves a lot of stooping or back strain. Your local Jobcentre Plus office will put you in touch with Disability Employment Advisers who can arrange work assessments. They can advise you on changing the way you work and on equipment that will help you to do your job more easily. If necessary, they can also help with retraining for more suitable work. If work or career planning is difficult do mention this to your doctor, specialist or physiotherapist.

If possible, rest flat for 20 minutes at lunchtime. When you finish for the day, have a break before tackling any jobs at home.

Driving

Driving shouldn’t be a problem if you have ankylosing spondylitis, but there are a few points to bear in mind:

  • On a long journey, stop from time to time for 5 minutes and get out of the car for a stretch.
  • If your neck or back is very stiff, reversing into parking spaces may be difficult – special mirrors can be fitted to help with this.
  • If your neck is stiff it will be more prone to injury. Make sure your head rest is correctly adjusted.
  • If you can’t walk very far you may be eligible for a Blue Badge, which entitles you to use disabled drivers’ parking spaces.

Getting life insurance

Life-insurance companies often don’t understand this disease, so they may want to load the premium, but most people with ankylosing spondylitis should be able to get normal terms. Shop around if a loading factor is included and don’t be afraid to appeal against it.