Questions you May Have
Click on your question
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. - return
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What exactly is AS?
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
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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
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Is AS common?
AS affects approximately 1 in 200 men and 1 in 500 women in Britain. - return to top
Who gets AS?
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
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Is AS 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
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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
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What are the symptoms of AS?
Typical symptoms of AS include:
-
Slow or gradual onset of back pain and stiffness over weeks
or months, rather than hours or days.
-
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.
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Weight loss, especially in the early stages.
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Fatigue.
-
Does AS 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 top
Does AS 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
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How does AS affect 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 where you can be treated by an ophthalmology
team, rather
than to your GP. 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
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How does AS 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
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How does AS 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 AS 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. - return to top
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
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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
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ANTI-TNF
In the last few years readers of AS News have followed the reports
in the developments of a new form of treatment for some rheumatic
diseases, including ankylosing spondylitis. These are called TNF
blockers or anti-TNF drugs and three of them have now received a
Europe-wide license. They were first used in rheumatoid arthritis
(RA) simply because there are more people with RA than AS, therefore,
not unnaturally the first trials were on patients with RA.
Over the last few years, trials in Europe and North America,
based on treatment regimes as set out in the manufacturers' recommendations,
have been conducted on the use of these biologic agents for ankylosing
spondylitis and a few other rheumatic diseases. These trials have
demonstrated conclusively, that in many cases, there are both
clinical improvements and in a few studies, improvements in Magnetic
Resonance Imaging (MRI) parallel to the clinical improvement.
The evidence suggests that there is reason to suspect that in
AS, the drug is even more effective than it is in RA, especially
as it is recognised that AS has a limited response to anti
-inflammatory
drugs.
The drugs are used for treatment of severe AS: there are 3 anti TNF drugs licensed for the treatment of AS. They are adalimumab (Humira), etanercept (Enbrel) and infliximab (Remicade). Only adalimumab and etanercept have been approved by NICE; they issued their guidance to the use of these drugs in May 2008. Infliximab was turned down on the grounds of cost. The 2 approved drugs are both administered via self injection: in the case of Enbrel once or twice a week and for Humira, once a fortnight. Remicade is provided by an infusion in hospital, approximately every 6 weeks. For more information on anti TNF drugs follow the link to the research section of the site.
The 2 drugs approved by NICE should now be available to patients if they meet the criteria laid down by NICE and the drugs are recommended by their rheumatologist. If you have any problems gaining access to an anti TNF drug and you have the support of your rheumatologist in prescribing it, then please contact NASS for further help and advice.
The NICE recommendations are:
Adalimumab and etanercept are recommended as treatment options for adults with severe active
ankylosing spondylitis only if all of the following criteria are fulfilled:
- The patient’s disease satisfies the modified New York criteria for diagnosis of AS.
- There is confirmation of sustained active spinal disease,
demonstrated by a score of at
least four units on the Bath AS
Disease Activity Index (BASDAI) and of at least four on the 0 to 10 cm spinal pain visual analogue
scale (VAS) on two occasions at least 12 weeks apart without any change of treatment.
- Conventional treatment with two or more non-steroidal anti-inflammatory drugs taken sequentially at maximum
tolerated or recommended dosage for four weeks has failed to control symptoms.
It is recommended that the response to adalimumab or
etanercept treatment should be assessed 12 weeks after treatment is initiated, and that treatment should
be discontinued in the absence of
an adequate response as defined.
For the purposes of this guidance an adequate response to treatment is defined as a:
- Reduction of the BASDAI score to 50% of the pre-treatment value or by two or more units, and
- Reduction of the spinal pain VAS by 2 cm or more.
Patients who have experienced an
adequate response to treatment,
as defined, should have their condition monitored at threemonthly intervals. If the response
to treatment, as defined is not maintained, a repeat assessment should be made after a further six
weeks. If at this six week assessment
the response has not been maintained, treatment should be discontinued.
Prescription of an alternative anti TNF is not recommended in patients who have either not achieved
an adequate initial response to treatment or who experience loss of the initially adequate response
during treatment.
It is recommended that the use
of adalimumab or etanercept
for severe AS should be initiated
and supervised only by specialist
physicians experienced in the diagnosis and treatment of this condition.
Infliximab is not recommended
for the treatment of AS. Patients
currently receiving infliximab should have the option to continue therapy until they and their clinicians
consider it appropriate to stop.
The review date for this guidance is proposed as July 2010.
The Committee also made some proposals for further research:
- Studies to investigate the long-term effects of anti TNF
in patients with AS, including
their effects on disease activity,
functional status, structural damage, quality of life and adverse effects.
- Studies to establish the
appropriate duration and pattern of long-term treatment with anti TNF.
- Studies to examine whether
patients’ AS would respond to more than one anti TNF drug given sequentially.
The collection of data through a
register of patients with AS receiving
anti TNF treatment in England and Wales will be essential to addressing the issues described above.
For the full text see www.nice.org.uk/Guidance/TA143
However, basically the recommendations are that everybody should
be tested and treated for the TB germ if they have previously
had TB or in contact with other people who have had the disease.
This is because, in very few cases, there is evidence that TB
has been reactivated as a result of this treatment. It is recommended
that pregnant women should not be treated but this is only a precaution,
as nothing is known. Also people with active significant infection,
as well as certain types of heart complications, and certain types
of disease process affecting the central or peripheral nervous
system should all be excluded. All patients must meet the modified
New York criteria for AS, after taking reasonable measures to
ensure that the symptoms are not due to alternative causes such
as spinal fracture, disc disease and fibromyalgia. The doctor
must also be of the opinion that all other forms of medication
have failed, which includes anti-inflammatory drugs and disease
modifying agents, such as methotrexate. The patient must also
have reached a score of more than 4 on what is known as the Bath
Ankylosing Spondylitis Disease Activity Index (BASDAI), and spinal
pain score during the previous week, measuring more than 4 on
the Visual Analogue Scale (VAS). - return to top
Is AS life-threatening?
Virtually never.
What causes AS?
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
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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 AS?
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 AS?
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 or MRI scans 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
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Is there a cure for AS?
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. - return
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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
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The Spine
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. More Spine
Info... - return
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