Basics of ankylosing spondylitis
Ankylosing spondylitis primarily affects the spine or back. In a person with ankylosing spondylitis, the joints and ligaments that normally permit the spine to move become inflamed and stiff. The bones of the spine may grow together, causing the spine to become rigid and inflexible. Other joints such as the hips, shoulders, knees, or ankles also may become involved.
Almost all people with ankylosing spondylitis can expect to lead normal and productive lives. Despite the chronic nature of the illness, only a few people with ankylosing spondylitis will become severely disabled. The management of pain and the control of inflammation can reduce the daily problems that may occur with ankylosing spondylitis. By watching posture and body position and by doing exercises daily, the individual can control many of the effects of the disease.
Ankylosing spondylitis is rarely crippling and the symptoms can be managed in most people. Keep in mind that each person with ankylosing spondylitis responds to treatment differently; what works for another person may not work for you. Be patient and actively participate in your care. Even though a cure is not known at present, you can do a lot on your own to control your symptoms.
Ankylosing spondylitis is not a fatal condition.
Fertility and pregnancy
Pregnancy in women with ankylosing spondylitis does not usually involve any special problems for mother or baby. However, some medications can be harmful to unborn children. If you are pregnant or planning to become pregnant, you will need to discuss the use of medication with your doctor.
Symptoms of ankylosing spondylitis appear most frequently in young men between the ages of 16 and 35. It is less common in women, whose symptoms are often milder and more difficult to diagnose.
About five percent of ankylosing spondylitis begins in childhood; boys are more likely to have it than girls. When children develop ankylosing spondylitis, it usually begins in the hips, knees, bottoms of heels, or big toes and may later progress to involve the spine.
The gene is present in eight percent of healthy white Americans and two to three percent of healthy African Americans. About 300,000 Americans (less than one percent of the adult population) have ankylosing spondylitis. The disease is three times more common in whites than in African Americans.
Heredity seems to play a role in determining who gets ankylosing spondylitis.: approximately one in five people affected by ankylosing spondylitis have a relative with the same disorder. A genetic "marker" called HLA-B27 is present in most people who have AS. However, most people (about 80%) who test positive for the marker never develop the disease. What "triggers" the disease in those patients who may be susceptible to it (i.e. patients who test positive for HLA-B27) is not well understood.
Some of this material may also be available in an Arthritis Foundation brochure. Contact the Washington/Alaska Chapter Helpline: (800) 542-0295. If dialing from outside of WA and AK, contact the National Helpline: (800) 283-7800.
Adapted from the pamphlet originally prepared for the Arthritis Foundation by Frank C. Arnett, M.D. Professor of Internal Medicine, University of Texas Medical School at Houston. This material is protected by copyright.
Ankylosing spondylitis is a systemic disease, meaning it can affect the entire body in some people. It can cause fever, loss of appetite, and fatigue, and it can damage other organs besides the joints, such as the lungs, heart, and eyes. Most often though, only the low back is involved.
The eye is the most common organ affected by ankylosing spondylitis. Eye inflammation (iritis) occurs from time to time in one-fourth of people with ankylosing spondylitis. Iritis results in a red, painful eye that also leads to photophobia, increased pain when looking at a bright light. It is a potentially serious condition requiring medical attention by an ophthalmologist. Luckily, it rarely causes blindness but it can affect vision while the inflammation is present.
Less frequently, ankylosing spondylitis may be associated with a scaly skin condition called psoriasis. In rare cases, typically when the ankylosing spondylitis has been present for many years, ankylosing spondylitis may cause problems with the heart or lungs. It can affect the large vessel called the aorta that moves blood from the heart into the body. Ankylosing spondylitis can cause inflammation where the heart and aorta connect leading to possible enlargement of the aorta.
Symptoms similar to that seen in ankylosing spondylitis may also may occur along with such conditions as psoriasis, inflammatory bowel disease, or Reiter's syndrome. It is thought that bowel inflammation is somehow tied to the development of ankylosing spondylitis and this is the reason that people with inflammatory bowel disease, i.e. Crohn's disease or ulcerative colitis are at an increased risk of the illness.
The inflammation in ankylosing spondylitis usually starts around the sacroiliac joints, areas where the lower spine is joined to the pelvis. The pain associated with ankylosing spondylitis is worse during periods of rest or inactivity. People with ankylosing spondylitis often awaken in the middle of the night with back pain. Typically, symptoms lessen with movement and exercise.
Over a period of time, pain and stiffness may progress into the upper spine and even into the chest and neck. Ultimately, the inflammation can cause the sacroiliac and vertebral bones to fuse or grow together. When this occurs, the normal flexibility of the spine, including the neck, is lost and the whole spine becomes rigid. Similarly, the bones in the chest may fuse, causing a loss of normal chest expansion when breathing.
The hips, shoulders, knees, or ankles also may become inflamed and painful and eventually lose their mobility. if these joints are damaged to the point where daily activities become compromised or very painful, it is often possible to surgically reconstruct those joints with total hip arthroplasty, total knee arthroplasty, or total shoulder arthroplasty. The heels may become affected, making it uncomfortable to stand or walk on hard surfaces.
Doctors usually base their diagnosis of ankylosing spondylitis on symptoms (pain, stiffness) and X-rays showing inflammation of the sacroiliac joints at the back of the pelvis.
If your symptoms or X-rays suggest ankylosing spondylitis, but the diagnosis is uncertain, your doctor may perform a blood test to check you for the HLA-B27 gene. About 90 percent of people diagnosed with ankylosing spondylitis do test positive for this gene.
Treatment for ankylosing spondylitis should be designed to reduce pain and stiffness, prevent deformities, and help you maintain your normal activities.
The basics of treatment include:
- Attention to posture
Should these approaches fail to provide adequate relief and should the spine, hips, knees or shoulders become damaged or painful, there are a number of reconstructive surgical procedures available, including spine surgery, total hip arthroplasty, total knee arthroplasty, or total shoulder arthroplasty.
Health care team
You should choose a doctor experienced in treating arthritis. Your doctor will work with you to decide when you need the help of other health professionals, such as physical or occupational therapists.
Effective treatment of ankylosing spondylitis relies on a partnership between you and your care providers.
Exercise and therapy
Regular exercise is an essential part of the overall management of ankylosing spondylitis. Your physical therapist with arthritis experience can design a program of exercises to meet your needs. Exercises that strengthen the back and neck will help maintain or improve your posture. Deep breathing exercises and aerobic exercises will help keep the chest and rib cage flexible. Swimming is an excellent way to exercise since it promotes flexibility of the spine; movement of the neck, shoulder, and hip joints; and deep breathing.
If you sometimes feel too stiff and sore to exercise, try taking a hot bath or shower to loosen up. Begin your exercises slowly and plan to do them when you are the least tired or have the least pain.
Whether your overall medical condition would permit an exercise regime would be a good topic for you to discuss with your internist, family doctor, or rheumatologist. The initiation of a fitness program in someone who has never participated in one before certainly should be done under the guidance of a physician or physical therapist.
Physical therapy is not believed to prevent progression of AS, but it may minimize symptoms in some patients.
Make every effort to keep your spine straight. Sleep on a hard mattress. Try to sleep on your stomach without a pillow under your head. You also can try sleeping on your back with a thin pillow or one that supports the hollow of your neck. Keep your legs straight rather than sleeping in a curled position. If you find it difficult to sleep in these positions, talk to a physical therapist about other possible options.
When walking or sitting, keep your spine as straight as you can with your shoulders squared and your head up. A test for correct posture can be done by standing with your back against the wall; your heels buttocks, shoulders, and head should be able to touch the wall all at once. Be sure that chairs and work surfaces are designed so that you don't slump or stoop.
Corsets and braces, in general, are of little value in treating ankylosing spondylitis. You are much better off maintaining good posture by exercising properly.
Medication is usually an essential and ongoing part of treatment. While medications do not cure ankylosing spondylitis, they do relieve pain and stiffness, allowing you to exercise, maintain good posture, and continue normal activities.
Several types of medication help treat ankylosing spondylitis. Nonsteroidal anti-inflammatory drugs (NSAIDs) reduce inflammation and relieve pain. Typical NSAIDs include indomethacin, piroxicam, or naproxyn. Side effects of NSAIDs include stomach upset leg swelling and rarely ulcers or bleeding from the stomach. Newer NSAIDs, known as the COX-2 inhibitors (rofecoxib, celecoxib) may be able to relieve inflammation and painwith fewer side effects. Aspirin has been found to be of little use in treating ankylosing spondylitis. Higher doses of NSAIDs are usually required to relieve the inflammation in addition to the pain.
A medication called sulfasalazine has been shown to reduce the inflammation and symptoms of ankylosing spondylitis, but it is not known whether sulfasalazine may slow or halt the progression of the disease. Some of the new medications that affect an inflammatory substance called TNF are being investigated as possible agents that may affect the course of theillness.
Whichever medications your doctor prescribes for you, be sure to take them as directed, even when you seem to be feeling fine. Also, talk to your doctor about possible side effects and what to do if they occur. If your symptoms worsen, call your doctor.
Surgery is a rare measure used in the management of ankylosing spondylitis. Joint replacement surgery is enabling many people to regain the use of joints that have been affected by ankylosing spondylitis and other forms of arthritis. Hip, knee, and shoulder replacements can be successful in ankylosing spondylitis. Rarely surgery can be done to straighten the spine but requires a significant expertise and should only be done by those with experience in the this area.
Strategies for coping
People who develop a chronic illness such as ankylosing spondylitis learn over time to cope with emotional ups and downs.
Learning to cope with ankylosing spondylitis often requires accepting changes. You may need to make changes in your relationships, work habits, and leisure-time activities. You may have to deal with changes in your appearance. All of these possible changes may leave you sad, stressed, depressed, or angry. Sometimes it helps to talk about these feelings with a family member, close friend, counselor, or someone else who has ankylosing spondylitis.
Asking for help
There may be times when you and your family are faced with problems caused by your disease that you do not know how to solve. You might want to talk to a counselor who has experience working with people who have arthritis. If so, your doctor probably can recommend one. It also may help to get to know other families who are living and coping with ankylosing spondylitis.
There are several organizations devoted to educating and supporting people with ankylosing spondylitis. One of these is the Spondylitis Association of America. In addition, to find a rheumatologist (physicians who specialize in treatment of spondylitis) or to learn what is new in the understanding or treatment of ankylosing spondylitis, contact the American College of Rheumatology.
The majority of people with ankylosing spondylitis are able to continue a productive, active work schedule. Whether you work in or outside the home, the following suggestions may help. It may be helpful to discuss your work with your rheumatologist.
If your current job involves prolonged stooping or excessive strain on your back, you may want to contact a vocational rehabilitation agency in your state for guidance. The agency also may be able to help you if your experience, education, or training make it difficult for you to change jobs.
Family and friends
Most forms of arthritis do not limit one's ability to enjoy romantic and sexual relationships. From time to time, however, problems such as pain and limited movement--especially of the hip joint--may get in the way of sexual enjoyment. Some extra planning may be all that's needed.
One of the most important aspects of a good sexual relationship is good communication. If you and your partner can comfortably discuss each other's needs, you probably can overcome almost any difficulty.
If some of your joints have fused or if you already have limited joint mobility, you may find it helpful to use some adaptive equipment or self-help aids. For instance, long-handled shoehorn or sock aids can help if your back or hips don't bend easily.
When driving, always wear a seat belt with a shoulder harness and have the headrest in your car adjusted to support your neck. If a stiff neck or back makes backing into parking spaces difficult, try fitting your car with extra-wide mirrors.
Because your neck and spine may be hurt easily, avoid activities that could cause falling or produce a sudden impact. Talk to your doctor or occupational therapist about ways to avoid injury and ways to improve your ability to function.