Questions and answers about ankylosing spondylitis
What does ankylosing spondylitis mean?
Ankylosing means fusing together. Spondylitis indicates inflammation of the vertebrae.
Both words come from the Greek. So, AS describes the condition by which some or all of the
joints and bones of the spine fuse together. Entire fusing of the spine is unusual. Many
people will only have partial fusion, sometimes limited to the pelvic bones.
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What exactly is ankylosing spondylitis?
AS is a painful, progressive, rheumatic disease. It mainly affects the spine but it can
also affect other joints, tendons and ligaments. Other areas, such as the eyes, lungs,
bowel and heart can also be involved. - return to top
What actually happens?
Inflammation occurs at the site where certain ligaments or tendons attach to bone
(enthesis). This is followed by some erosion of bone at the site of the attachment
(enthesopathy). As the inflammation subsides, a healing process takes place and new bone
develops. Movement becomes restricted where bone replaces the elastic tissue of ligaments
or tendons. Repetition of this inflammatory process leads to further bone formation and
the individual bones which make up your backbone, the vertebrae, can fuse together. The
pelvis is commonly affected first. The lower back, chest wall and neck may also become
involved at different times. - return to top
Is ankylosing spondylitis the same as spondylosis?
No. They sound similar but they are different. Spondylosis is a term relating to
"wear and tear" and is more common in older people. AS relates to an
inflammatory condition which produces new bone and leads to fusion. The vigorous exercise
therapy designed for people with AS might be harmful to those suffering from spondylosis. - return to top
Is ankylosing spondylitis common?
AS affects approximately 1 in 200 men and 1 in 500 women in Britain.
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Who gets ankylosing spondylitis?
Men, women and children can all suffer from AS. It typically strikes people in their
late teens and twenties, with the average age being 24. However, symptoms can start at
other periods of life. AS is more common in men, with nearly three times as many men
having it as women. - return to top
Is ankylosing spondylitis different in men, women and children?
Yes. AS tends to affect men, women and children in slightly different ways. Men: The
pelvis and spine are most commonly affected. Other joints which may be involved are the
chest wall, hips, shoulders and feet. - return to top
Women: Involvement of the spine is generally less severe than in men. The
pelvis, hips, knees, wrists and ankles are the most commonly involved. Children: It is
unusual for a child under the age of 11 to develop symptoms of AS. The joints which are
typically affected first are the knees, ankles, feet, hips and buttocks. They rarely
suffer from back pain. In youngsters, AS may lead to persistent hip disease ultimately
requiring a hip replacement sometime in adult life. - return to top
What are the symptoms of ankylosing spondylitis?
Typical symptoms of AS include:
- Slow or gradual onset of back pain and stiffness over weeks or months, rather than hours
- Early-morning stiffness and pain, wearing off or reducing during the day with exercise.
- Persistence for more than three months (as opposed to coming on in short attacks).
- Feeling better after exercise and feeling worse after rest.
- Weight loss, especially in the early stages.
- Feeling feverish and experiencing night sweats. - return to top
Does ankylosing spondylitis affect other joints?
Yes. AS sometimes causes aching, pain and swelling in the hips, knees and ankles.
Indeed, any joint can be affected. In most cases the pain and swelling will settle down
after treatment. It is particularly important to stretch the hip joint to prevent
stiffening in a bent position making you lean forward. The heel bone can become
particularly troublesome causing pain in two areas. Most common is the under surface,
about three centimetres from the back of the foot. This is called plantar fasciitis and
can last for many weeks. It may respond to an insole for the shoe designed to take weight
off that part of the heel. The less common pain arises at the back of the heel where the
Achilles tendon is attached to the heel bone. Pressure from the shoe may aggravate the
pain. - return to
Does ankylosing spondylitis affect other organs?
Yes. AS can sometimes affect the eyes, heart and lungs. These effects are not
life-threatening and they can be treated with relative ease. - return to top
How does ankylosing spondylitisaffect the eyes?
AS can cause inflammation of the iris and its attachment to the outer wall of the eye,
the uvea. 40% of people will develop iritis or uveitis on one or more occasions. Usually
the first symptom is a slight blurring of vision in one eye but the main symptom is a
sharp pain together with a dramatically bloodshot eye. To avoid permanent damage you
should receive prompt treatment. It is a good idea to go straight to a casualty
department, rather than to your GP, where you can be treated by an ophthalmology team.
Tell them that you have AS. They will give you eye-drops which will reduce the
inflammation in a matter of hours. Continue treating yourself with the eye-drops for as
long as the inflammation persists. - return to top
How does ankylosing spondylitis affect the heart?
Very occasionally AS can have a mild effect on the heart. In most cases this is so mild
that it is difficult to detect. AS may cause the aortic valve to leak. More commonly,
though, it affects the conduction of electrical activity within the heart. Usually any
such problems are unnoticed by the person with the condition. - return to top
How does ankylosing spondylitis affect the lungs?
AS should not make you any more susceptible to lung or chest infections. However, it
may affect the rib joints and the muscles between the ribs making breathing, sneezing,
coughing or yawning painful. As a result, the lungs fail to become fully ventilated. You
will find some advice in the exercise section of this booklet to help you maintain normal
chest wall movement. Sometimes the lungs may get scarred, a condition know as apical
pulmonary fibrosis. This will show up on an X-ray but does not usually cause any symptoms.
In the late stages of AS the chest wall may become quite fixed and affect air entry in and
out of the lungs. This does not mean you stop breathing! The diaphragm muscle continues to
work and your stomach moves in and out as you breathe. Large meals and tight clothing will
increase the effort of breathing so you may find it more comfortable to avoid these. It is
also vital to avoid smoking since this will not only make breathing more difficult but it
could cause potentially serious lung and chest infections. - return to top
Does ankylosing spondylitis affect everybody the same way?
No. AS is a very variable disease. Some people have virtually no symptoms whereas
others suffer more severely. However, at NASS we know that those patients who follow an
appropriate course of exercises tend to do better than those who don't.
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Will I need surgery ?
It is unlikely. Surgery plays a very small part in the management of this condition.
About 6% of people with AS need to have a hip replaced. This will successfully restore
mobility and eliminate pain of the damaged joint. In rare cases surgery is used to restore
a straighter posture of the spine and neck to people who have become severely stooped. - return to top
What medication will I need?
Over 80% of people with AS take non-steroidal anti-inflammatory drugs (NSAID) to reduce
inflammation and relieve pain and stiffness. However, some people may experience
side-effects with NSAIDs and prefer to take simple pain killers such as paracetamol. For
others, especially those who suffer from inflammatory bowel disease (Crohn's disease and
ulcerative colitis) or peripheral joint arthritis, a disease-modifying antirheumatic drug
like sulphasalazine may be required. - return to top
Is ankylosing spondylitis life-threatening?
Virtually never. - return to top
What causes ankylosing spondylitis?
We're not entirely sure. So far medical research has shown that 96% of people with AS
in Britain all share the same genetic cell marker - Human Leucocyte Antigen B27 (HLA-B27).
It is possible that some normally harmless micro-organism, which on this occasion the
immune system cannot fight, comes into contact with HLA-B27 and sets up an adverse
reaction. Sometimes bowel infections appear to spark off AS. Symptoms may also become
apparent after a period of enforced bed rest, for example following a car accident,
accelerating a previously existing mild condition. A group of symptoms known as Reiter's
Syndrome may also lead to AS. These include iritis (or uveitis) which is inflammation of
part of the iris; and conjunctivitis which causes red, gritty and painful eyes. People
with Reiter's Syndrome also suffer from urethritis. This is inflammation of the urethra,
the tube that conveys urine from the bladder out of the body. This results in pain on
passing urine, discharge on the end of the penis (especially on waking up in the morning)
and an increased frequency of passing urine. Women may get the pain but won't notice a
discharge from the urethra. Reiter's Syndrome also results in arthritis, affecting the
large joints, especially in the legs, together with pain in the joints of the lower back
particularly at night or on waking. - return to top
What is the risk of passing it on to my children?
If a parent has AS there is a 50% chance that the B27 gene will be passed on to a
child. However, not everyone with the B27 gene will go on to develop AS. Overall, the
likelihood of your child developing AS will be less than 1 in 10 (or 1 in 5 if B27
positive). The chance of a child inheriting the condition from a grandparent will be less
than 1 in 20. Should your child develop early symptoms of AS, it is advisable to ask your
GP for a referral to a rheumatologist. - to top
Are any other diseases associated with ankylosing spondylitis?
A skin condition called psoriasis is associated with AS. Psoriasis causes scaly patches
on the skin and scalp. It can also lead to a slightly different form of arthritis. A
sexually acquired infection known as Non-Specific Urethritis (NSU) can be caused by an
organism called chlamydia. This leads to urethritis and sometimes other features of
Reiter's Syndrome. Ulcerative colitis or Crohn's disease are also related to AS but are
not caused by it. The symptoms are bouts of bloody diarrhoea, often with fever, weight
loss, and an associated peripheral arthritis in some cases. - return to top
How can I be sure I have ankylosing spondylitis?
If you have the classic symptoms of AS, your GP will look at your posture to see if the
lumbar spine is losing the forward curve and beginning to flatten out. If so, the GP will
probably refer you to a rheumatologist who will study X-rays of your spine and look for
characteristic changes to the joints in the lower back. Unlike other rheumatic conditions,
blood tests are not very helpful for diagnosing AS. - return to top
Is there a cure for ankylosing spondylitis?
Alas, there is not! Anti-inflammatory drugs will help to reduce pain and improve your
sleep and general well-being. But drugs are only half the answer. Appropriate exercise is
crucial to managing your AS. The drugs should enable you to carry out these exercises with
less pain. You will find some of these exercises later in this booklet.
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What is the end result?
AS seems to affect everybody slightly differently. In general, though, you will
probably find that the symptoms come and go over many years. In the classic case, the
lumbar spine can become stiff, caused by the growth of additional bone, as can the upper
spine and neck. If you pay attention to your posture, exercise regularly and avoid the
stoop associated with the condition, you can prevent this from becoming too serious. - return to top
The spine is made up of 24 vertebrae and 110 joints. There are 3 sections: 7 cervical,
12 dorsal or thoracic and 5 lumbar vertebrae. The cervical, or neck section, is the most
mobile. In the thoracic section each vertebrae has a rib attached to it on each side.
Below the lumbar section is the diamond-shaped sacrum which locks like a keystone into the
pelvis. The joints between the sides of the sacrum and the rest of the pelvis are called
the sacroiliac joints. This is usually the starting-point of the condition where the low
back pain and AS begin.