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ANKYLOSING SPONDYLITIS

Ankylosing spondylitis is a painful, progressive rheumatic disease, mainly of the spine.  It can also affect other joints, tendons, ligaments and other areas, such as the eyes and heart.  Ankylosis means fusing together, while spondylitis indicates inflammation involving the joints of the spine and is derived from the Greek words describing the building blocks of the spine (spondylos) and “itis” meaning inflammation.  However, it is important to be aware that the entire fusing of the spine, as implied by the name of the condition, is not the norm.  Many people will only have partial fusion, sometimes limited to the pelvic bones.

What Happens?
The inflammatory process is at the site of a joint or where tendons and/or ligaments grow into bone. Inflammatory changes occur around vertebral joints and areas of ligament attachment, such as, at the bone (ischial) you sit on in your buttocks, or breastbone, or where the tendon inserts into the heel. As a reaction to the inflammation, a small amount of bone erosion occurs. After the inflammation has subsided, a healing process takes place with the growth of new bone (reactive bone). After repeated attacks, this additional bone growth can surround the disc, and two vertebrae can become one by this merging process.
What Causes Ankylosing Spondylitis?
The cause is not yet known. However, there have been many important discoveries since the early 1970s.   One genetic marker is the genetic cell marker HLA B27 (Human Leukocyte Antigen B27). This is related to white blood cells and is quite different from red cell groups such as A, B, O and rhesus markers.  There is evidence that an outside environmental process must be responsible for initiating the condition and its flare-ups.  It could be that a normally quite harmless micro-organism, which would be dealt with by our immune system, sets up an adverse reaction after coming into contact with the B27 individual.  In most cases, this leads to inflammation of the sacroiliac joints and to different areas of the spine.
Who Gets Ankylosing Spondylitis?
The average age of onset is twenty-four years old and the sex distribution is 2.5-3 males/female.

The Formation of the Spine

The spine is made up of 24 vertebrae and 110 joints.  The spine is divided into three sections: seven cervical, twelve thoracic and five lumbar vertebrae.  The cervical, or neck section, is the most mobile.  In the thoracic spine each vertebra has a rib attached to it on each side.  Below the lumbar spine 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 often the starting-point of the condition where the low back pain and AS begin.

What are the Symptoms of Ankylosing Spondylitis?
  1. GRADUAL OR SLOW onset of back pain and stiffness over weeks or months, rather than hours or days.
  2. AGE of onset is the late teens and twenties, rather than any age.  The symptoms can start at other periods of life, but are more likely to have been sparked off by illness or injury (i.e. enforced bed rest).
  3. EARLY-MORNING STIFFNESS AND PAIN, wearing off or reducing during the day with exercise/activity.
  4. PERSISTENCE (CHRONIC) for more than three months (rather than coming on in attacks).
  5. IMPROVEMENT WITH EXERCISE AND DETERIORATION WITH REST.  The opposite is the case with mechanical back problems.

In summary, the person is YOUNG with GRADUAL onset of pain, and notes that the pain is worse in the MORNING and improves with EXERCISE.  By contrast, nonspecific or mechanical pain typically comes on rapidly at any age as a result of some ill-advised movement, is worse in the evening, episodic in nature and improves with rest.

The Diagnosis of Ankylosing Spondylitis

The diagnosis is often suspected from the patient’s history.  The doctor will then note the posture and might notice that the lumbar spine is losing the forward curve and is beginning to flatten out.  X-rays of the spine should show characteristic changes to the sacroiliac joints.  In most cases, more severe bony changes appear after months or even years of disease.  Blood tests may be performed and the ESR (Erythrocyte Sedimentation Rate) may give an indication of generalized inflammation.  In some cases, where there is still doubt, the doctor might test for the patient’s tissue type.  The objective will be to establish if the person has the HLA B27 antigen.  In a borderline situation, the B27 positivity or negativity will help to confirm or refute the diagnosis.  However, it is not a necessary test and the test alone can never provide a definite answer.

Not always confined to the back

Although we have been talking about a disease of the spine, pain is not always confined to the back. Some people will have chest pain from time to time.  However, the pain does not come from the heart, but from the joints between the ribs and the spine, from inflammation in the sternum joints, or from the sites of ligament insertion into the ribs (intercostal muscles).  Many people complain of a “shut-in” feeling because of reduced chest expansion.  In these cases the diaphragm does the work of filling the lungs, rather than the rib cage.  The start of AS often begins with an ache in the buttocks, in the back of the thighs and down the leg and in the lower part of the back.  One side is commonly more painful than the other.  The pain typically arises from the sacroiliac joints.

The condition from time to time might affect joints or bony sites other than the spine.  The hips, knees and heels are the most common locations, with aching and pain sometimes accompanied by swelling in the joint, which usually will se ttle down after treatment.  It is important that the hip joint in particular is stretched to prevent stiffening in a bent position which will make you lean forward. The heel bone may become painful in two areas.  Most common is the undersurface, about three centimeters from the back of the foot. This is called plantar fascitis 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 bone.  Pressure from the shoe may aggravate the pain.  Sitting on hard chairs can be unpleasant, as sometimes pain will be felt under the pelvic bones due to contact pressure.

Drug Treatment

Although the disease cannot be cured, anti-inflammatory drugs, through reduction of inflammation and thus pain, often allow improvement in sleep and general well-being, resulting in a greater ability to carry out exercises.  However, these drugs are not habit-forming.  There are over twenty different non-steroid anti-inflammatory drugs, which come in many different shapes and sizes.  Analgesics themselves have a very little role, if any, in this condition.  However, for those individuals who cannot tolerate non-steroid anti-inflammatory drugs, usually with gastrointestinal complications, a pure analgesic may be the only alternative.  For those with a particularly aggressive disease, and especially people with peripheral joint involvement, methotrexate, azathioprine and sulphasalazine are often considered.  The last of these has been studied quite extensively and is particularly useful for peripheral joint symptoms.  The effect on the spine is probably marginal.  Methotrexate is frequently used in people with psoriatic arthritis, but it remains unknown if spondylitis itself is helped.  It is a big mistake to think that drug therapy alone is appropriate for managing ankylosing spondylitis. DRUGS ARE SIMPLY GIVEN TO REDUCE THE INFLAMMATION, PAIN AND STIFFNESS, to allow you to become MORE ACTIVE.

SOFT TISSUE AREAS

The Eye

It is important for people who have AS to be aware that they are at risk for an attack of iritis or uveitis.  Forty percent of people will develop this problem on one or more occasions.  Usually the first symptom is a slight blurring of vision in one eye.  However, whether this is noticed or not, in most cases the main symptom is sharp pain, together with a dramatically bloodshot eye.  It is important to receive prompt treatment.  Not all health care practitioners may be aware of the connection between AS and uveitis.  This is very important because delay may result in permanent damage.  Usually the pain will subside within hours after the course of treatment.  In most cases, this will last for two or three weeks.  It is possible for the eye condition to precede the onset of AS in the spine, but this is uncommon.

The Heart

Heart involvement does occur in ankylosing spondylitis, but most cases are mild.  It can particularly affect the aortic valve which can leak, but more commonly it can affect the induction of electrical activity within the heart; usually any such problems are unnoticed by the person with the condition. On the very rare occasion when treatment is needed surgical intervention may be helpful.

The Lungs

Ankylosing spondylitis affects the rib joints and intercostal muscles (muscles between the ribs) which means that breathing, sneezing, coughing or yawning can be painful.  This results in the lungs failing to become fully ventilated, and one should therefore do breathing exercises.  This encourages your lungs to regain their original volume.  Scarring within the lungs may also occur; which often can be seen on x-rays.  There is no evidence to suggest that AS makes you more susceptible to chest infections.  For all people with ankylosing spondylitis it is of paramount importance to stop smoking.  The reason for this is that in the late stages of the disease the chest wall may become quite fixed and therefore air entry in and out of the lungs will be affected.  Clearly, smoking can make the situation much worse and allow development of other infections and lung diseases.

Primary versus Secondary Ankylosing Spondylitis
(Secondary Ankylosing Spondylitis occurs in relation to Psoriasis, Inflammatory Bowel Disease and Reiter’s Syndrome)

There are a few other conditions associated with ankylosing spondylitis, and some people will have an overlap with one or more of them.  For example, juvenile arthritis, inflammation of the bowel, Reiter’s syndrome, psoriasis and some infections of the bowel can predispose to AS.  There are some sexually acquired infections which can also lead on to AS.

X-ray changes in the spine of primary ankylosing spondylitis look very much like spondylitis associated with inflammatory bowel disease.  By contrast, psoriatic spondylitis and that associated with Reiter’s disease tend to look somewhat different, with more fluffy radiological changes.  Of interest is that enteropathic spondylitis (i.e. that following inflammation of the bowel) has an equal sex distribution, whereas psoriatic spondylitis favors men in a ratio of 4 to 1 compared to the general background of ankylosing spondylitis of 2.5 to 1.

Ankylosing Spondylitis in Children

England and the United States >90% of patients present over the age of sixteen.  By contrast to the developing world, some 25-30% first develop symptoms in childhood.  The specific difference between adult onset and childhood onset relates to the fact that children tend to present, not with back pain, but with peripheral joint involvement – usually the knee, hip, ankle, or other large joints. Regarding the long-term prognosis, children are more likely to have persistent hip disease that can lead to a need for total hip replacement.

Children can develop arthritis at any age, but boys more than girls from the age of 10 years many get swollen knees or painful hips.  In later life (i.e. in the twenties or thirties) they may get other features of AS which can be anticipated if they possess the HLA B27 antigen.

Inflammation of the Bowel

The condition of ulcerative colitis or Crohn’s disease, overlap with AS in a few people, but is not caused by it.  The symptoms are bouts of bloody diarrhea, often with fever, weight loss, and an associated peripheral arthritis in some cases.

Furthermore, our intestines contain bacteria which cause no harm and indeed help us to remain healthy.  However, some infections from contaminated food cause diarrhea, or in severe cases (dysentery).  Some of these infections develop into AS.  It is a cause of great interest to research workers why some bacteria lead on to AS and others don’t.

Reiter’s Syndrome

  1. Conjunctivitis (red, gritty, painful eyes) or uveitis.
  2. Urethritis (inflammation of the urethra which 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 (which is the tube from the bladder to the vagina).
  3. Arthritis which may affect the large joints, especially in the legs.  Also unilateral sacroiliac joint involvement with severe pain, especially at night or early morning.

Sexually Acquired Infections

Syphilis and gonorrhea do not cause AS.  However, chlamydia infections can result non -specific urethritis causing urethritis and sometimes other features of Reiter’s syndrome.

The Skin

Psoriasis, a scaly skin condition, is also associated with AS.  It can present with scaly patches in the skin which in some cases can be quite extensive.  The scalp may be involved and results in a slightly different form of arthritis of the joints.

What Happens, What’s Next, What Can I Do to Help Myself?

No two cases of AS are identical.  The symptoms will come and go, varying in intensity.  There is no warning as to when the next flare-up will occur and no indication as to when it will resolve.  After the age of fifty, the attacks may become less frequent.  In some cases this period of permanent remission will happen earlier in life.  The severity of the stiffening associated with the condition will also vary.  It is therefore important to maintain a good posture.  The serious deformities of the spine can be prevented and mobility maintained.  Those people who have lost an upright posture will find it difficult to come to terms with.  Many of them have been greatly helped through the National Ankylosing Spondylitis Society (NASS) newsletter and coming into contact with others through their local NASS branch.  Successful management of the condition requires co-operation between the doctor, the physical therapist and the patient.  Any notion that the patient might have of simply handing themselves over to the doctor, who will prescribe a magic pill, is not only erroneous but dangerous.  It takes considerable will power to carry out a regular exercise program.  The growth of the NASS branches is now playing an increasing and important role in the management of the condition in this country.

PATIENT’S JOB TO KEEP EXERCISING AND MAINTAINING A GOOD POSTURE

Rest

There is a role for rest in this condition, as it is often advantageous to take the weight off your spine by getting horizontal for 10-15 minutes.  For some, a period off work might be necessary.  Nonetheless, strict bed-rest is rarely indicated as this might hasten the stiffening process of the spine. Specific back exercises must be diligently preformed.  Furthermore, prolonged bed-rest results in deconditioning and muscle weakness with wasting.

Prone Lying

This is lying face downwards and can be done at the start and end of each day for twenty minutes, if possible.  Those people who have had the condition for some years at first might not be able to tolerate this for more than five minutes at a time and will have to build up with practice until the spine becomes more relaxed.  Some people who might have lost a little posture will find it more comfortable to put a pillow under their chest.  This is not only good for the spine, as it counteracts the forward stooping posture, but it also keeps the hip joints straight.  Lying on your bed on your back with your legs dangling towards the floor can also be a good stretching exercise.

The Bed

Should be firm without sag. If your bed has an interior sprung mattress, get a suitable board and put it between the mattress and the bed.  A sheet of plywood or chipboard 70x150x1cm is ideal.  This is important to maintain posture.  Mattresses should be inspected more regularly with posture in mind. You should try and reduce the number of pillows to one, or even none. If you lie on your back with a high pillow you could gradually lose a good posture in your neck and shoulders.

Chairs

Since untreated AS causes increasing flexion of the spine, every endeavor must be directed towards keeping an erect posture.  Even though it is uncommon for the spine to stiffen completely, one should always remember to do as much as possible to maintain a straight spine.  One’s chair in the office or home has an important role to play.  The seat should not be too long, as the person will have difficulty in placing their lower spine into the back of the chair.  It should be of a height which will allow the sitter to keep a right angle with the knee and hip joints.  Low, soft chairs and sofas are a disaster area.  They will encourage bad posture and increase pain.

The Physical Examination

When AS is suspected your doctor will examine your spine, noting its posture and mobility and look for evidence of disease in other parts of your body.

What Tests Does the Doctor Do?

The diagnosis of AS is supported by X-rays.  The characteristic changes are in the sacroiliac joints, but they may take many months to develop and may not be obvious during the first consultation. The doctor may also ask for a blood test, which may illustrate how active the disease is.  This is called an ESR, showing the sedimentation rate.  Sometimes anemia can occur.  In some cases, especially where there might be some doubt about the diagnosis, the doctor may ask for the HLA B27 antigen to be tested.  If present, the diagnosis could be supported. If HLA B27 is not present, AS is very unlikely but not impossible (24:1 against, for those who gamble!)

What is the End Result?

The condition takes a different course in different people and no two cases are exactly the same.  The symptoms will come and go over many years.  However, sometimes it does go into remission.  In the classic case, the lumbar spine can become stiff, caused by the growth of additional bone, as can the upper spine and neck.  There is evidence that the patient can play a significant part in influencing how serious this becomes.  People with AS must, throughout this period, pay constant attention to their posture to avoid the forward stoop associated with the condition.

The Medical Management of AS

There is no cure for Ankylosing spondylitis, therefore the emphasis must be on disease management. This is why patient education is so important.  Most people with the condition take regular anti-inflammatory drugs to relieve the pain.  These drugs are not habit-forming or addictive.  The person must then carry out a regular exercise program. There is no doubt that not only do these exercises help to maintain mobility and posture of the spine, but they also assist in pain reduction.  The National Ankylosing Spondylitis Society is also playing an important role in the lives of an increasing number of people at this level.

Heat

In its various forms heat will help to relieve pain and stiffness. Many people find a hot shower or bath before bed and first thing in the morning will reduce pain and stiffness, especially if some stretching exercises are done at the same time. A hot-water bottle or electric blanket are used by many in bed.   Some people also find that cold, when applied to an inflamed area, helps. For instance, a bag of frozen peas wrapped in folded tea towels (take care, as ice can burn).

Surgery

In most cases where surgery is involved it will apply to about 6% of people with AS who will go on to have a hip replaced (arthroplasty).  These are very successful and will restore mobility and eliminate pain of the damaged joint.  Rarely, surgery is required to restore a straighter posture of the spine and neck in individuals with severe deformity.

Corsets and Braces

Unfortunately these are still often prescribed by some doctors not familiar with the modern management of the condition.  They very often make matters worse, as they hold the spine rigid.  Not moving leads to not being able to move!

At Work

Pay special attention to the position of your back when at work, trying to avoid stooping.  If you sit at a desk or workbench pay attention to the height of your seat.  Try and move your spine regularly, straighten it out and stretch it by sitting tall and pulling your shoulders back.  A job that allows a mixture of sitting, standing and walking is ideal.  A rest period is helpful at the end of the working day, especially for those who have a heavy or tiring job.  Lying horizontally for twenty minutes is excellent, as it helps to counteract the forward stooping posture of the spine.  Some people with AS have found it necessary to make adjustments to their working lives.  However, for many the opportunities for change are not always available.  It might, however, be useful to show your employer this handout if you are thinking of discussing a job change within the company.

General Health; Weight Loss, Anemia, Fatigue and Diet

When this condition is active your health as a whole often suffers.  Many people lose weight and find that they get unusually tired, anemic and can get depressed.  You need a good nourishing diet and plenty of rest.  Your doctor can give you iron tablets for the anemia.  However, one needs plenty of protein found in meat, fish and poultry.  Fruit and vegetables are sources of vitamins and milk will supply calcium.  There are many books on diet and arthritis.

HLA B27: The Inheritance Factor and the Family

Ankylosing spondylitis is virtually confined to the people who inherit the cell marker HLA B27.  About 96% of people who have AS have inherited HLA-B27. However, it is important to remember that there are far more people with HLA-B27 who never get AS.  There are families where one brother and sister might both have inherited B27 from a parent but only one of them may develop AS.  This is sometimes noticed in identical twins; many cases are so mild they never get diagnosed. People who have AS often ask if they should have their children tissue-tested for HLA B27.  The answer is that it should not be done, as the chances of the child inheriting the B27 gene is 50%. However, the chances of the child developing the condition in a diagnosable form is only 1 in 3 of those with B27 or 1 in 6 of all the children.  However, we recommend that any child with knee, hip or back symptoms should go to their family doctor.  The doctor should be reminded that the child has a parent who has ankylosing spondylitis.

Sexual Activity

AS does not normally interfere with love-making.  However, there are cases when it obviously does, especially when the hips are involved, or when the condition is in a flaring stage.  However, there are some people who have lost a considerable amount of spinal posture which can also produce difficulties during love-making. Good dialogue between partners should surmount any problems, and don’t forget a sense of humor. Fatigue can be involved with the condition and therefore should be kept in mind and not be confused as some other signal.

Women and Ankylosing Spondylitis

The main differences in the sexes is that women tend to have more peripheral joint disease (reminiscent of children) and perhaps less aggressive spinal disease.  Women were often mislabeled as having “seronegative arthritis” or one of the other inflammatory joint diseases.  In general, the approach to treatment is the same in both sexes, although particular care should be paid towards women who may be of childbearing age.

Pregnancy

Generally speaking, pregnancy in AS is not a problem.  In some types of arthritis, especially rheumatoid arthritis, the condition goes into remission during the pregnancy period.  This unfortunately is not true with AS.  As most births are during one’s earlier life, the condition very often has not reached the stage when it could influence a difficult birth.  However, where hips are involved, a caesarian operation might be necessary.  It is usually advisable to stop taking anti-inflammatory drugs during the first 12 weeks and last 4 weeks of pregnancy.  Try and increase your exercise program at this time, in an attempt to reduce any tendency of increased pain due to not taking the anti-inflammatory agents.  The restarting of your drug regime after birth does depend on whether you are breast-feeding.

Sport

It is important that all people with AS remain physically active. The sporting activity of most benefit is swimming, since all of the muscles and joints are exercised in the horizontal position.  It also helps to maintain lung capacity, which in the condition generally falls below normal.  However, most people with AS can continue to take part in a sport of their choice.  The notable exclusion is contact sports, such as boxing, wrestling, judo and rugby.  It could be advantageous, if you do not already participate, to take up a sport, such as badminton or volleyball.

Car Driving

Most people with AS will find an increase in pain and stiffness during prolonged car driving.It is therefore important to keep breaking one’s journey to walk around.Many people with AS have stiff or rigid necks, others have noticeable neck restriction.This presents problems for drivers, especially at junctions.One must experiment with fixing an assortment of additional mirrors.  Most car accessory shops will have a selection.  Most modern cars now come equipped with head restraints. It is important that these, if adjustable, are appropriate and effective for each person’s head position. Spondylitics with neck involvement can suffer severe injury to their necks, even in the event of a small impact. It is difficult to know at what stage the spondylitic driver should inform the driving license authorities and driving insurance companies of the condition.

Please note the above information was obtained from the following web site.  Dr.Suthar reviewed this information and changes were made to make the information more concise and easier to read.

If you require any further information contact:-  

N.A.S.S
PO Box 179
Mayfield
East Sussex
TN20 6ZL

Bus: 01435 873527
Bus Fax: 01435 873027
E-mail: nasslon@aol.com

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