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AS INFORMATION

The following extracts has been taken from a booklet by the Arthritis Research Campaign. For, perhaps, more detailed and up to date information go to the NASS Website

Ankylosing spondylitis (AS) is a rheumatic disease that affects the spine and may lead to some degree of stiffness of the back.

WHAT HAPPENS
Spondylitis means inflammation in the joints of the spine, and comes from the Greek word for vertebra (Spondylos). As the inflammation goes and healing takes place, bone grows out from both sides of the vertebrae and may join the two together; this stiffening is called ankylosis.

The cause is not yet known. Occasionally more than one member of a family may get it as there is a hereditary factor. AS is neither infectious, contagious nor can it be caused by athletic activity or injury. However, symptoms sometimes follow unusual exertion or strain, which may be blamed at first. Typically, it attacks young men but can occur in women as well.

THE BACKBONE
The backbone, or spine is made up of 24 bones (vertebrae) and 110 joints. The three main sections, cervical, thoracic and lumbar, differ in their shape and curve. The cervical or neck section is most mobile. In the thoracic or chest section, each vertebra has a rib attached by joints on each side. Below the lumbar section is the sacrum which sits like a keystone in the ring of bone which forms the pelvis. AS usually starts at the sacro-iliac joints which lie between the sacrum and the pelvis.

NOT JUST BACKACHE
Back troubles are some of the most common complaints seen in a GP's surgery. Two per cent of a doctor's patients consult him/her every year with backache. Most people with back pain don't have AS and the doctor must recognise the possible different nature of backache in each patient.

The most common cause of backache is 'back strain', which can happen at any age. A 'slipped disc' is another example. In older patients, degenerative or wear-and-tear problems often affect the back. Diagnosis is made by listening to your symptoms, and examining you. Your doctor may do certain blood tests and arrange for an X-ray.

THE EFFECTS (Early Signs)
At the start, AS usually causes low backache and stiffness and may be diagnosed as lumbago. You may feel pain in the buttocks, possibly down the back of your thighs and in the lower part of your back. You may have first noticed these symptoms after some exertion or strain. Aches and pains in the neck, shoulders and hips, or in the thigh (like sciatica) may follow.

In a few cases the first complaint may not be in the back at all, but in the hip or knee, or in the leg perhaps just a swollen knee. In the beginning, in spite of these complaints, even careful examination by a doctor may reveal nothing.

Some experience nothing more than a series of mild aches and pains coming and going over a period of months, never troubling them greatly. Others pass through a phase of active AS when symptoms are more troublesome; they become generally unwell, lose weight and tire easily. Gradually the ailment settles down and the worst pains disappear.

When AS has been present for several months the back may stiffen, usually lower down; and in some patients the disease then dies out, causing no further trouble. The stiff back is often painless and does not interfere with physical activity, because the upper part of the spine, the neck, hips and limbs can remain quite normal. If you feel stiff in the early morning this is a sign of inflammation and perhaps it may be an hour or so before you have properly limbered up - it may indicate the need for anti-inflammatory drugs.

In its early stages AS causes considerable pain, but effective treatment is available to relieve this, even though the discomfort is not always banished. Later the disease becomes much less active, or even ceases completely. You will most probably be able to carry on with your work and lead a normal life.

LIMB JOINTS
Sometimes, either earlier or later, AS may affect joints other than the spine. The hips, knees, ankles and shoulders may be involved. The smaller joints of the hands and feet can be attacked but usually only in a few places. You may experience a period of aching in the joints in question, perhaps with some swelling. As a result some of them may not move fully but, with treatment and active exercises from the start, the disability is slight. In particular, your hip must not be allowed to stiffen in a bent position as this can lead to damage in the knees, and cause more backache.

OTHER TROUBLE SPOTS
Tender places may sometimes develop in bones that are not part of the spine - the heel bone for example. When this is affected it becomes uncomfortable to stand on a hard floor. The bone of your 'seat' (ischium) can be involved and make sitting on chairs uncomfortable.

Some patients experience chest pain. This does not come from the heart, but from the joints between the ribs and the breast bone. You may notice a strapped-in feeling as the ribs become less easy to move. However, your lungs are working well because the diaphragm is not affected. Breathing exercises will help you maintain ribcage mobility.

Iritis (inflammation of the iris which forms the pupil) occasionally occurs, so if you suddenly develop a red eye go to your doctor immediately.

Other rare complications, affecting less than one patient in a hundred, may occur. These include the heart, lung and nervous system, but treatment is available for all of them. Patients with AS are not any more at risk from getting heart attacks, strokes, or cancer, than the general population. Colitis, or inflammation of the bowel, is associated with AS in some patients, as is a skin condition called psoriasis.

TESTS
AS is often not diagnosed until a patient has had backache for two or three years or even longer. A blood test called the ESR (erythrocyte sedimentation rate) may show an abnormal result in the early stages and so help your doctor to distinguish it from more common forms of backache. X-rays may also confirm it. However, in the early stages these may be normal, even when the symptoms are severe.

A special test (HLA-B27 antigen) can be used. This is like testing for a blood group but concerns the white and not the red blood cells. If it is positive, it shows that you have a tendency to AS but does not prove the diagnosis.

ASSOCIATED PROBLEMS
It is now clear that AS is one of a group of diseases ('spondarthritides'). Other examples are: psoriasis, colitis, Reiter's syndrome, juvenile arthritis. Each of these can occur with AS or even before it. Some children can develop arthritis which later develops into AS. In some cases, Reiter's syndrome, which is caused by an infection of the bowel or the urethra (the tube from the urinary bladder), can develop into AS. The link between these and other diseases has revealed some of the inherited factors that are involved. Also, we are beginning to understand some of the 'triggers' that can start the condition in those who are at risk.

THE OUTLOOK
AS takes a different course in different people, and no two cases a re exactly the same. The symptoms may come and go over long periods, but in the end it almost always settles down. Your lower back will probably become stiff, but the same can happen to he upper part of your back and neck as well. Therefore it is most important to maintain a good posture.

Not every patient suffering from AS will return to normal, even when the exercises are followed, but serious deformities can usually be prevented. Sufferers with a bent back can often be acutely self-conscious and concerned about how others see them. But even though this may be difficult most patients can come to terms with the problem.

SUMMING UP ANKYLOSING SPONDYLITIS

TREATMENT
Do your best to keep fit. Eat anything, especially protein such as meat and fish, but don't get overweight. Take plenty of exercise. The motto for treatment which all patients should remember is: It is the doctor's job to relieve pain, and the patient's job to keep exercising and maintain a good posture.

REST
If the AS is very active and the stiffness very troublesome, a spell off work or in hospital may be necessary. This does not mean keeping still in bed, because this can hasten the stiffening of the spine. So even a spell of rest from work means that you will be encouraged to do exercises for your back, chest and limbs to keep them supple.

When you are in bed it is important that you should lie quite flat on your back; some of the time you should practise lying on your front. 'Prone lying , as it is called, is best done for twenty minutes before rising in the mornings, and twenty minutes before going to bed at night.

At first you may not be able to tolerate more than five minutes at a time, or may even need a pillow under your chest. But with practice, as the spine relaxes, it will become easier. If you make a habit of this, it will help prevent your back and hips becoming bent. It may, of course, not be practical every day but it is better to devote some time to it than nothing at all.

YOUR BED
Your bed should be firm. If you have an internally sprung mattress, get a suitable board put between the mattress and the bed frame . A sheet of plywood 70 x 150 x 1 cm is ideal. A hardboard door panel is satisfactory but not so durable. You will find this more comfortable to lie on than a bed which is too yielding. Even when the painful active phase of AS is passed, it is important to keep a firm bed in order to prevent any tendency for spinal curvature.

MEDICAL APPROACH
There is no cure at present for AS. The doctor aims to relieve the symptoms, improve spinal mobility where this has been lost, and to allow the patient to hold down a normal job and social life.

Although it will tend to become less active as you get older treatment must continue. In particular you must pay close attention to keeping good posture, mobility and exercise.

Although the disease cannot be cured, much can be done to help. The doctor will prescribe tablets that relieve pain (analgesic) and inflammation. There are several drugs which will reduce or kill the pain, give you a good night's sleep and sufficient freedom from pain to do exercises.

You will probably need tablets during bad patches and some people need a small maintenance dose of their drug over a longer period. Some of the newer tablets are manufactured to remain effective throughout the night, and even the next morning. If you cannot find a suitable tablet to last throughout the night, suppositories (inserted into the back passage) may be used.

It is not necessary to give drugs by injection. The drugs used for AS are not habit-forming (ie you will not get addicted to them).

Heat in its various forms will help to relieve pain and stiffness. A hot bath before going to bed, a hot-water bottle or electric blanket may be quite enough. It is seldom necessary to use special lamps.

Surgery has only a small place in treatment. An operation is use to help restore movement to damaged hip joints (arthroplasty) and, rarely, to straighten the back or neck of someone who has become so bent they cannot look forward (and find it dangerous just to cross the road).

POSTURE
Since untreated AS causes increased bending of the spine (the patient becomes progressively more stooped), you must keep as straight and erect as possible. Hardback, upright chairs or straight-back rocking chairs are far better for your back posture than low, soft, upholstered chairs.

Pay special attention to the position of your back when at work, so that you do not have to stoop. If you sit at a desk or bench, see that your scat is at the proper height and do not sit in one position for too long without moving your back.

A job which allows sitting, standing, and walking is ideal. The most unsuitable work is one in which you have to stoop over a bench for hours at a time. If you have a heavy or tiring job do not tackle other activities at home or elsewhere until you have had a break. If necessary, rest flat for a time. It may also help if you can rest flat for twenty minutes at midday. At such times try to lie for part of the time face downwards.

If your job involves a lot of stooping or back strain, talk this over with your doctor. S/he, or a doctor from the hospital or from the Employment Medical Advisory Service, may be able to advise you on how you may change to more suitable work. Some AS sufferers have found it helpful to show this booklet to their employers or their doctors in explaining their needs.

Corsets and braces are hardly ever helpful, and indeed can make AS worse. It is better to develop your own muscles, and keep a straight back by natural means. Very occasionally some form of support may be necessary, for example, after a back injury. However, this decision should only be taken by a doctor who is experienced in treating patients with AS.

THE FAMILY
In the UK, and in most populations of European origin, AS is virtually confined to those who inherit the white cell group HLA-B27. This group also occurs in 7~10% of the healthy population. Nearly a sufferers from AS will have this particular blood group.

However, it is very important to note that there are far more people with this blood group who never get AS than those who do. Even in families where one member suffers, a brother or sister can share the same blood group and never get the disease.

Parents with AS sometimes ask if their children should have the HLA-B27 test - to see whether they may develop the disease in the future. The answer at present is 'no'; there is no way of knowing which child with this blood group is likely to get the disease and it would only cause unnecessary worry.

SEX AND PREGNANCY
AS usually starts in the most sexually active period of one's life. The disease can make the sufferer feel tired, which may reduce the desire for sexual intercourse. This may put a strain on a loving relationship which can also be aggravated by lack of understanding by the partner. You may experience pain during sexual intercourse because of inflammation in the sacroiliac joints and lumbar spine. Lack of mobility of the hips, especially in women, would also cause difficulty. Patients may be helped in various ways. The inflammatory pain can be suppressed with drugs. Poorly mobile hips can be treated with an artificial hip joint. And if surgery is not appropriate, there are alternative positions for sexual intercourse. There may be a need for sexual counselling for both partners; organisations such as Relate can be very helpful in this respect.

Pregnancy in women with AS provides no special problem for mother or baby. However, in contrast with some other forms of arthritis the condition does not die down during pregnancy. The babies are usually born by the normal route, but occasionally a Caesarean operation is necessary if the hip joints become stiff.

Although tablets commonly used for treating AS have never been shown to damage the unborn baby (foetus), it is sensible to take as few as possible especially during the first three months of pregnancy.

EMPLOYMENT
AS sufferers are capable of doing a wide variety of jobs, from strictly sedentary to manual, such as carpenters and builders. Many have pursued very successful professional and business careers.

AS is not a sentence to life-long unemployment.

DRIVING
If you have to make a long car journey, stop from time to time for five minutes and get out of the car for a stretch as pain and stiffness can distract your attention.

Many people with stiffness of the neck and other parts of the spine have difficulty in seeing to back into parking spaces or a garage. special mirrors can be fitted onto your car to help you. If this is the case, it is worth practising this new backing technique in

an open area with some light wooden obstacles (such as a broom handle stuck in the earth) to act as markers.

The stiff neck of a sufferer is more easily hurt than normal, so restraints are advised to avoid sudden deceleration injuries to the neck. Disabled driver's stickers may be used if you can't walk very far, but this is rare in AS. (See ARC LEAFLET, Driving and Your Arthritis)

SOME QUESTIONS ANSWERED
How should I take my tablets?
Pain-relieving tablets are usually best taken during a meal or just before; they irritate the stomach lining less when mixed with food. This is not of vital importance so don't worry if you cannot.

Why do I feel tired?
Tiredness is sometimes due to the activity of the disease and this is detected by a blood test - the ESR. Occasionally anaemia causes tiredness, although some people remain anaemic for long periods and keep perfectly fit. Tiredness is commonly due to frustration and depression rather than to the disease.

Would manipulation help the spine?
Unfortunately no. In fact manipulation of the spine, especially the neck, can be positively dangerous.

Would acupuncture help?
Acupuncture may relieve pain, but it does not affect the disease.

Does treatment in a pool help?
The advantage of exercise in water is that the buoyancy of water helps movement. There is no special benefit from brine or other types of baths. Some hospitals have a pool in the physiotherapy department but ordinary public swimming pools are usually just as satisfactory for patients with AS.

Can I do anything to stop stiffness in the morning?
Some find a hot bath helps; others prefer doing exercises. Doctors sometimes advise that tablets or a suppository are taken last thing at night.

Will I have any trouble in taking out a life; padding-top: 5pt-insurance policy?
Life-insurance companies often do not understand this disease, so they may want to load the premium. But it should be possible to get normal terms. The National Ankylosing Spondylitis Society has, over the years, helped members and it now has a list of companies who are more sympathetic to sufferers. Patients should shop around if a loading factor is included and, if that fails, contact NASS.

Is it all right to be on the birth-control pill?
Yes, but always mention this to your doctor.

What is the chance that my children will get AS?
The chance of your children developing it is small, not more than 1 in 50, compared with 49 out of 50 chances of producing a normal, healthy child. No doctor would discourage a patient with AS from having a family.

Is any research going on to try and find the cause of AS?
Yes, in many centres around the world, but it costs money and the ARC has supported numerous projects. Studies following on the discovery of HLAB27 have proved very revealing on the influence of inheritance and infection.