ANKYLOSING SPONDYLITIS -a patient's guide
- Ankylosing spondylitis (AS) is an arthritic condition affecting the spine, and vary rarely the heart, eyes, lungs and heart.
- It is not life threatening but fusion of the spine can be painful and restrict movement over time.
- It usually affects young adults, seems to affect more men than women(children are rarely affected)
- Symptoms include back pain - worse after inactivity and easing after stretching and exercise;
- It is diagnosed by physical examination and X-rays.
- The cause is not fully understood, although a genetic marker, HLA-B27, may hold clues in the future. It is not infectious.
- The chances of inheriting it are 1:10 from a parent and 1:20 from a grandparent.
- There is no known cure but treatment using anti-inflammatory medication, maintenance of good posture and exercise will usually relieve pain, maintain mobility of joints and allow a normal active life.
- Surgery is not a common treatment for AS.
What is ankylosing spondylitis (AS) ?
Ankylosing spondylitis (AS) is a painful, progressive form of inflammatory arthritis where some or all of the joints of the spine fuse together. Many people with the condition have only partial fusion, and entire fusing is unusual. Some have fusing limited to the pelvis area.
AS can affect other joints, tendons and ligaments as well as(rarely) the heart, eyes, lungs and bowel.
AS is virtually never life threatening.
How does AS happen?
AS begins as inflammation at the point where ligaments or tendons join the bone. The bone begins to wear away at this point of attachment and as the inflammation reduces, new bone grows. This replacement of the stretchy tendon or ligament with bone leads to restricted movement. This inflammation process is repeated, and as more bone is formed eventually individual bones of the backbone or vertebrae can become fused. This process commonly begins with the pelvis, but the lower back, chest wall and neck may also be affected at different times.
How common is it?
AS can affect men, women or less commonly, children. Typically it shows up in late teens or twenties, but can strike at other periods of life.
It is three times more common in men .
Incidence is 1 in 10,000 in the UK.
Men are generally affected in the pelvis and spine although may have chest wall, hips, shoulders and feet affected. Women are less severely affected in the spine, with pelvis, hips, knees, wrists and ankles more commonly affected sites.
It is uncommon for children under eleven years to show symptoms of AS.
However, AS is widely variable. Some people suffer virtually no symptoms while some suffer more severely. In most cases those who follow an appropriate set of exercises tend to find relief from pain and cope better than those that don't.
What are the symptoms?
Typical symptoms include:
- onset of back pain gradually or stiffness over weeks or months
- stiffness and pain in early morning which wears off or reduces during the day with exercise or movement
- ongoing pain over 3 months rather than short episodes
- more pain or stiffness after rest than after exercise
- stooping over time
- weight loss, especially during early stages
- experiencing night sweats
- feeling feverish
What causes AS?
The cause of AS, like many rheumatological conditions, is not completely understood.
Some cases show up after a period of inactivity, for example during a bed rest recovery. In these cases a previously mild or unrecognised condition becomes worse during lack of exercise.
Studies show over 95% of UK sufferers share a common genetic marker - HLA-B27. It is possible those with the marker are more prone to developing the condition. Studies exploring a possible association between certain bacteria and ankylosing spondylitis are underway but as yet results are unconclusive.
Reiter's syndrome, described below, appears to have led to development of AS in some cases, as can bowel infections.
What are the risks of passing on AS?
AS is not infectious.
In general terms, the chance of a child inheriting the condition from a parent that suffers the condition is less than 1 in 10. The chance of inheriting the condition from a grandparent is less than 1 in 20. A parent with AS has a 50% chance of passing on the B27 gene which appears to affect the development of AS, however not all that carry the gene develop the condition.
Children who develop early symptoms of AS should be referred to a rheumatologist.
Are there other conditions related to AS?
A number of other conditions may more rarely be associated with AS including;
- Psoriasis - a condition forming scaly patches on the skin and scalp - can be associated with AS and can lead to a form of arthritis.
- Reiters Syndrome - a set of symptoms affecting the eyes and urethra and eventually leading to arthritis - can lead to AS.
- Non-specific Urethritis (NSU), can lead to features of Reiter's syndrome and onto AS in some cases.
- Ulcerative colitis and Crohn's disease are related but not caused by AS.
Note; Spondylosis is not the same as ankylosing spondylitis. Spondylosis relates to general wear and tear of bones, whereas AS is a condition where inflammation leads to new bone formation and fusion.
Does AS affect other parts of the body?
AS can affect other organs including the eyes, heart and lungs but these effects can be treated with relative ease and are not life threatening.
How can AS affect the eyes?
The iris and its attachment, the uvea, can become inflammed, known as iritis or uveitis. This affects 40% of those with AS on one or more occasions. The main symptom is a sharp pain followed by a very bloodshot eye, although slight blurring of vision in one eye may be the first symptom. Prompt treatment to avoid permanent damage is required,
How can AS affect the heart?
In some occasional cases the heart can be affected by AS. It is often difficult to detect as the effect is mild and goes unnoticed by the sufferer. The electrical activity of the heart may have the conductivity altered, or the aortic valve may leak.
How can AS affect the lungs?
The changes to rib joints and muscles between the ribs from AS may make breathing, sneezing, coughing and even yawning painful which may lead to less ventilation of the lungs.
AS should not make a person more likely to get lung or chest infections, but lack of chest wall movement due to painful breathing,sneezing, coughing etc, may lead to scarring of the lungs, known as apical pulmonary fibrosis. Symptoms will usually show only on X-rays.
Late stages of AS may lead to the chest wall becoming fixed and affect breathing. The diaphragm muscle still moves air in and out of the lungs, although tight clothing and an overfull stomach may mean breathing becomes more difficult.
How is AS diagnosed?
AS is usually diagnosed by symptoms as described above. A GP will examine the curvature of the lumbar spine will be examined. If the spine is beginning to show flattening out, referal to a rheumatologist is likely, where X-rays will be examined for changes to the joints in the lower back.
Unfortunately, blood tests are not good for diagnosing AS,but may exclude other conditions.
Is there any genetic testing available?
Screeing for the HLA-B27 gene marker may prove useful to identify likely sufferers, as studies into AS progress. Currently, testing for the presence of HLA-B27 is not a reliable guide to prognosis.
What is the treatment?
Medication is often used to ease pain associated with inflammation and stiffness. Most commonly used are non-steriodal anti-inflammatory drugs. Those who suffer side effects from these often use pain killers such as paracetamol.
An antirheumatic drug may be required by those also suffering inflammatory bowel disease or peripheral joint arthritis.
Surgery is not a common treatment for AS. Medication is often used to treat pain. Appropriate and specific exercises can be of great benefit.
Surgery may be appropriate for those ultimately needing a hip replacement - around 6% of sufferers. In rare cases, those whose posture becomes severely stooped may have surgery.
Prevention and care
Although there is no known cure for AS, general pain relief can be gained by using anti-inflammatory drugs, and by undertaking appropriate exercises to maintain mobility of joints.
Symptoms seem to come and go over the years for many sufferers, but regular attention to posture and exercise should mean life can be relatively normal.
Practical tips for sufferers:
- Posture - stop slouching or stooping, whether standing, sitting or lying. This means getting a chair with good lumber support, with arms and a head support. Low soft seating should be avoided. Move, stand and stretch the spine frequently. Beds should be firm but not too hard and one thin or no pillow is recommeded.
- Rest - the spine needs a daily rest. 15-20 minutes of lying flat on stomach or back, or on the back with legs dangling towards the floor is a good guide.
- Heat and cold - warming up the spine with a shower or bath in the morning along with a few stretches can relieve morning pain. Warm beds can help too. For times when particular areas are inflammed, a cold pack on the spot can help.
- No bracing - the spine needs to move and stretch and corsets or braces restrict this movement.
- Diet - protein, vitamins and calcium are important for bone health, so eat healthily. Carrying too much extra weight puts extra strain on the spine, so avoid becoming overweight.
- Don't smoke - lung capacity can be reduced in AS sufferers and smoking can make this worse leading to lung infections and breathlessness.
- Alcohol in moderation - take care if drinking when taking anti-inflammatory drugs, check medication information.
- Appropriate physical manipulation - osteopathy, chiropractory are not recommended, however physiotherapy is. A physiotherapist can prescribe exercises to help longterm with posture and movement.
- Exercise is excellent - muscles need to be kept strong, and those that have become shortened need to be stretched. Special exercises can be developed by a physiotherapist.
- Alternative remedies - whatever helps, within reason, can be used. There is no concrete evidence that alternatives prove more beneficial than conventional treatment, although massage and relaxation techniques can be beneficial. Check with your medical practitioner before trying new remedies, and check the alternative practitioner understands AS well.
How is a AS sufferer affected long term?
In general, a normal life can be led if posture and exercises are attended to, along with the practical advice listed above. Most AS sufferers who take care with the condition live a full and normal life. See below:
* Work - usually unaffected except in unusual occupations as long as special attention is paid to posture and movement.
* Driving - is fine with good back and neck support. Make sure long drives include stops for stretching, and look at installing extra mirrors if neck movement is limited.
* Sport - is encouraged, especially aerobic activity that gets the lungs working. Swimming, walking and other activities that get joints warmed up and moving are beneficial. Contact or high impact sports should be avoided. Take care to wear shoes with good insoles to avoid jarring.
* Sex life - should be fine. Care may be needed in some cases to make sure comfortable positions are found and that breathlessness does not cause problems. It is important to keep communicating both partner's needs to find satisfactory solutions.
* Pregnancy - not usually a problem. Some back pain may be increased as the pelvis is pushed forward, and in extreme cases a caesarian section may be necessary. Anti-inflammatory drugs are not recommended during the first 3 months and last month of pregnancy, and during breast feeding. Exercises and hydrotherapy can help with pain relief.
* Insurance - There is usually no good reason this should be affected by AS.
* Support - is important. Especially when first diagnosed, sufferers can feel isolated. Encourage friends and family to exercise with you. Tell friends, family and work collegues the limitations of AS, but also explain you are not disabled. Seek information and support groups if possible.