DID YOU KNOW?
- Ankylosing spondylitis affects between 150,000 and 300,000 Canadians.
- Ankylosing spondylitis (AS) affects men three times more often than women; however, cases of AS in women can be just as severe as those in men.
- People of any age can develop AS, but it usually appears between the ages of 15 and 30.
There is no cure for AS, but when you are diagnosed early and start the right treatment, you can take control of your disease and avoid severe damage to your joints. Most people with AS can lead active and productive lives with the help of the right medication, surgery (in some cases), exercise, rest and joint protection techniques.
WHAT IS ANKYLOSING SPONDYLITIS(AS)?
Ankylosing spondylitis (AS) is a type of inflammatory arthritis and an autoimmune disease. An autoimmune disease is one where the body's immune system becomes confused and begins to "attack" the body. In AS, the joints in the spine are the target of the immune attack, resulting in pain and stiffness (inflammation) in the back.
The first symptoms of AS typically start in late adolescence or early adulthood (ages 15-30). The inflammation of AS usually starts at the base of the spine, where the spine attaches to the pelvis (sacroiliac [SI] joints). This inflammation can spread upwards to involve other parts of the spine and, in the most severe cases, it can involve the entire spine. As the inflammation continues, new bone forms as the body tries to repair itself. As a result, the bonesof the spine begin to "grow together" or fuse, causing the spine to become very stiff and inflexible. Even though new bone has formed, the existing bone may become thin, which increases the risk of fractures.
AS can also cause pain and stiffness in peripheral joints, such as the hips and shoulders. It can also cause inflammation of the tendons surrounding the joints. This is called enthesitis. Some of the common spots for enthesitis are the back of the heels (Achilles tendonitis), underneath the bottoms of the feet (plantar fasciitis), on the outside of the hips (trochanteric bursitis) and along the breast bone (costochondritis).
When the immune system is confused, it can attack other parts of the body other than the joints and tendons. In AS, this attack may also cause inflammation in the eye, a condition called uveitis or iritis. In rare cases, the lungs and heart can also be affected.
AS is a highly variable disease that causes very different symptoms. Some individuals may only experience episodes of mild back pain, while others will have severe chronic pain accompanied by stiffness of the spine affecting their posture and daily activities.
The most universal symptom, however, is chronic low back pain that seems to come (flare) and go for no apparent reason. It is generally worse in the morning when rising from bed and improves with stretching and exercise.
WHAT ARE THE WARNING SIGNS OF AS?
The warning signs of ankylosing spondylitis include:
- The onset of new back pain/stiffness in a younger person (age 15-30).
- Back pain and stiffness that is worse in the morning, typically lasting more than 30-60 minutes before you "loosen up" and start feeling better. The pain and stiffness can sometimes be with you most of the day, even causing discomfort while you try to sleep at night.
- Pain and tenderness in other parts of the body, including the backs of the heels (Achilles), under the feet (plantar fascia), on the outside of the hips (trochanteric bursa) and along the breastbone.
- Sometimes one or a few joints may swell up for no reason (knee and ankle, for example).
- Recurring inflammation in the eyes causing pain, redness, blurred vision and sensitivity to bright light requiring the use of steroid drops into the eyes.
- A family history of AS
HOW DOES YOUR DOCTOR DIAGNOSE AS?
There is no specific test to diagnose AS. In fact, some people live with mild AS for many years without ever knowing they have it. However, any one or several of the symptoms previously mentioned may alert your doctor to the possibility of AS. The best way for your doctor to diagnose AS is to talk to you and carefully listen to your symptoms, followed by a thorough physical examination. Your doctor may then choose to perform blood tests to look for inflammation in the body. These blood tests are called erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP).
Finally, X-rays may be taken to determine if there are changes in the joints at the bottom of the spine (sacroiliac joints).
However, changes in these joints occur slowly over time and may not be present in early stages of the disease. Sometimes further imaging is done with a CT scan or an MRI. These imaging methods are used if the plain X-rays do not show changes, but there is a strong suspicion that AS may exist because of the symptoms or signs on physical examination.
WHAT DO YOU DO IF YOUR DOCTOR THINKS YOU HAVE AS?
If your family doctor believes that you have AS, it is important to see a rheumatologist to begin treatment. A rheumatologist is a doctor who is an expert in arthritis. You must get a referral from your family doctor to see a rheumatologist.
WHY IS EARLY TREATMENT FOR AS SO IMPORTANT?
AS causes inflammation in the spine and sometimes other joints (often hips and shoulders). This inflammation usually results in stiffness of the spine and other joints.
The goal is to keep the spine flexible and the joints moving, with the hope of preventing or delaying permanent damage.
WHY DO PEOPLE GET AS?
The majority of people (90 per cent) with AS have a gene called HLA-B27. There are a few things to remember about this gene:
- Not everyone with AS carries this gene; therefore, if your doctor tests you and you don't have it, you may still have AS.
- If you have this gene, it does not mean you will develop AS. This gene does not cause AS; it simply increases your risk of getting the disease. In fact, only a very small number of people with this gene will ever develop AS.
- There is discussion among researchers that other genes in the immune system may also lead to the development of AS. The current thought is that another "trigger" is needed to set off the disease. Unfortunately, we don't know what the "trigger" is. Some believe it may be a viral infection or something else in our environment. There may be more than one trigger. We do not yet know the causes or the cure for AS, but researchers in Canada and around the world are trying to learn what brings about this disease.
HOW CAN I MANAGE AS?
Once your diagnosis is confirmed, there are many treatments that can help decrease your pain and increase your movement. Non-medication therapies, such as physiotherapy, occupational therapy, education, physical activity, healthy eating and relaxation techniques, are a very important part of the treatment. While you can perform them on your own, it's best that you first ask a health-care professional for guidance.
Physical activity protects joints by strengthening the muscles around them. Strong muscles and tissues support those joints that have been weakened and damaged by arthritis. A properly designed program of physical activity reduces pain and fatigue, improves mobility and overall fitness, and alleviates depression. Physical activity allows someone with arthritis to have a more productive, enjoyable life. There are different types of exercises that you can do to lessen your pain and stiffness:
- Range of motion exercises reduce pain and stiffness and keep your joints moving. To achieve the most benefit, these exercises should be done daily.
- Strengthening exercises maintain or increase muscle tone and protect your joints.
- Moderate stretching exercises help to relieve the pain and keep the muscles and tendons around an affected joint flexible.
- Endurance exercises strengthen your heart, given you energy, control your weight and help you feel better overall. These exercises include things like walking, swimming and cycling. It is best to avoid high-impact exercises like step aerobics, jogging or kickboxing.
For more information, refer to The Arthritis Society's Physical Activity & Arthritis Guide [PDF].
Heat and Cold
Heat: Taking a warm shower and using warm packs are great ways to help reduce pain and stiffness. Always use a protective barrier, such as a towel, between the warm pack and the skin. Heat is ideal for:
- Relieving pain.
- Relieving muscle spasms and tightness.
- Enhancing range of motion.
To avoid making symptoms worse, heat should not be applied to an already inflamed joint.
Cold: Using a commercial cold pack or a homemade one (from crushed ice, ice cubes or a bag of frozen vegetables) can be helpful. Always use a protective barrier, such as a towel, between the cold pack and the skin. Cold is ideal for:
- Decreasing swelling.
- Decreasing pain.
- Constricting blood flow to an inflamed joint.
For further details on using heat and cold to manage your arthritis, speak with your health-care team.
Protecting Your Joints
You should always use your joints in ways that avoid excess stress. This allows you to experience less pain, perform tasks more easily and protect your joints from damage. Techniques to protect your joints include:
- Pacing by alternating heavy or repeated tasks with lighter tasks. Taking a break reduces the stress on painful joints and conserves energy by allowing weakened muscles to rest.
- Positioning joints wisely promotes proper alignment and decreases excess stress. For example, squatting and kneeling may put extra stress on your hips or knees. When lifting or carrying heavy items, keep items at waist height and avoid carrying them up and down stairs.
- Talk to your doctor about seeing an occupational therapist or physiotherapist, who may prescribe splints, braces or orthotics (shoe inserts) to help align and support your joints.
- Using assistive devices conserves energy and makes daily tasks easier. Raise seat levels to decrease stress on hip and knee joints. Use a reacher to pick up items from the ground. Use a cane to decrease stress on hip and knee joints. Enlarge grips on utensils, such as spoons or peelers, to decrease stress on delicate hand joints. Other devices to consider include carts for carrying objects and jar/tap openers.
Relaxation & Coping Skills
Developing good relaxation and coping skills can help you maintain balance in your life, giving you a greater feeling of control over your arthritis and a more positive outlook. Relaxing the muscles around a sore joint reduces pain. There are many ways to relax. Try deep breathing exercises. Listen to music or relaxation tapes. Imagine or visualize a pleasant activity, such as lying on a beach.
The most important link between your diet and arthritis is your weight. Being overweight puts an extra burden on your weight-bearing joints (back, hips, knees, ankles and feet). Maintaining an appropriate weight will help you more than any food supplements. If you are overweight and have arthritis, consider a balanced diet as a way to help you achieve and maintain a healthy weight. For others, healthy eating may give you the energy to complete your daily activities. Proper nutrition is vital to controlling body weight and managing arthritis symptoms.
For more information, read The Arthritis Society's Nutrition & Arthritis Guide [PDF] and watch the Nutrition and Arthritis video.
Watch Your Eyes
About 30 per cent of people with AS will develop iritis (eye inflammation). This is a rapid onset of inflammation in the front of the eyeball. The eye may feel irritated and there may be pain in the eye or surrounding area. You could experience headaches, blurred vision or sensitivity to light. It usually happens in one eye only. If you think you may have iritis, you need to see an ophthalmologist (eye specialist). Prescription eye drops may stop the attack and prevent potential loss of vision.
Take Care of Your Bones
People with AS may develop a fused spine. Often the fused spine can become brittle and become prone to easy breaks (fractures). Generally, people with AS should be taking calcium and vitamin D supplements. Activities involving forward bending or heavy lifting should also be avoided. Fractures are more common in AS when the spine is fused.
Fusion of the spinal joints in AS usually occurs in the late stages of the disease and may limit movement. Sometimes the pain and stiffness get better when this happens.
WHAT MEDICATIONS ARE USED FOR AS?
The general approach to treating AS is to reduce joint inflammation to improve your function and mobility, with the hope of preventing long-term damage to the spine and joints. Non-Steroidal Anti-Inflammatory Drugs (NSAIDs) are the most commonly used medication to treat the pain and inflammation of AS. Disease- Modifying Anti-Rheumatic Drugs (DMARDs) can be used in combination with NSAIDs, although they generally don't work as well for inflammation in the spine. DMARDs can sometimes be used when inflammation occurs in joints away from the spine. Corticosteroids (steroids) are sometimes used to try and control symptoms during flares of AS.
A newer class of medications called biologics has revolutionized the treatment of AS. These medications suppress inflammation and may help prevent damage to the joints of the spine. Biologics can block a molecule called TNF (tumour necrosis factor) that appears to be important in causing inflammation in AS.
Non-Steroidal Anti-Inflammatory Drugs (NSAIDs)
Non-Steroidal Anti-Inflammatory Drugs (NSAIDs) are a class of medications used to treat the pain and inflammation of arthritis. They do not contain steroids, hence the name "non-steroidal." It is important to remember that these medications work to improve symptoms and have no proven long-term benefits. As such, these medications can be taken on an as-needed basis. However, some patients may find it helpful to take their NSAID on a regular basis to control their symptoms. There is some recent evidence that these medications may help to prevent spinal damage in AS. Your doctor will advise you on what is suitable. Some patients will notice the effects of an NSAID within the first few hours of taking a dose. In other patients, the effects may not be evident for a few days and even up to a week or two after the medicine has been started. If it hasn't helped within two to three weeks, it is unlikely to be of much benefit. Your doctor might ask you to try a few different NSAIDs, as some may work better for you than others; what works varies from person to person. Indigestion, heartburn, stomach cramps and nausea are the most common side effects of NSAIDs. NSAIDs can affect the protective lining of the stomach, making you more susceptible to ulcers and bleeding.
COXIBs are a newer class of NSAIDs that have been developed to reduce the risk of gastrointestinal ulcers and bleeding. Although COXIBs are safer on the stomach, they have all of the other side effects of NSAIDs and may still cause indigestion, nausea, stomach cramps and heartburn.
Cortisone is a hormone produced naturally by the body's adrenal glands that regulates routine inflammation from minor injuries. Major traumas, such as broken bones or surgery, depend upon the adrenal gland to produce even more cortisone. But the adrenal gland cannot produce enough cortisone to meet the challenge of inflammatory arthritis. In the 1950s, physicians found that giving extra cortisone to patients with rheumatoid arthritis dramatically improved their symptoms. From this discovery, corticosteroids, also known as steroids, were developed and are some of the oldest, most effective and fastest working medications for inflammatory arthritis. Steroids can be given by mouth, injected into the joint, injected into a muscle or administered through an intravenous drip.
In AS, steroids are usually used for short durations to quickly relieve a flare of symptoms or get a newly diagnosed disease under control. Steroids work quickly (usually within a few days) and some patients start to feel better within hours of taking the first dose. To maximize benefits and minimize side effects, doctors prescribe corticosteroids in doses as low as possible and for as short a time as possible. Dosages vary widely and are based on your disease and the goals of treatment.
Disease-Modifying Anti-Rheumatic Drugs (DMARDs)
DMARDs are a class of medications used for treating rheumatoid arthritis; there is no good evidence that they are useful for most people with AS.
Biologics are a class of medications specially designed to treat inflammatory types of arthritis. There are a number of biologics available that work by different mechanisms. Those biologics that block a molecule called TNF (tumour necrosis factor) have been shown to be useful in controlling the AS symptoms of inflammation in the spine. This may be because TNF has been found in the inflamed joints of the spine in this disease. The use of these anti-TNF medications has been considered a major breakthrough in the treatment of AS. Biologics are administered in two ways: infusion and injection. Your doctor can provide you with information on the way in which different medications are administered and help make the right choice for you. An infusion means that the medication will be given to you through a needle placed in a vein in your arm. An injection means that the medication will be given by a needle under the skin of your abdomen or thigh.
Biologics are generally successful with most people; however, they can take some time to work. Some people may notice the effects of the medication quite quickly (within days to weeks), while others may take three to six months to feel the effects. Your doctor will recommend a therapy that is best suited to your type of arthritis, other medical problems and other medications. Biologics often work by suppressing your immune system, which can make it slightly harder for you to fight off infections. Please inform your doctor if you are prone to frequent infections. It is advisable to stop your medication and call your doctor if you develop a fever, if you have or think you have an infection or if you have been prescribed antibiotics. Any woman who is pregnant or may become pregnant should not take a biologic.
Please discuss the use of any arthritis medication with your doctor.
For more detailed information on arthritis medications see Arthritis Medications: A Consumer's Guide [PDF].
Living with a chronic disease like arthritis can be very frustrating, especially if the medications prescribed by your doctor don't seem to have the desired effect. In these instances, it can be tempting to exhaust all possible solutions for bringing your pain under control.
A popular option for many people with arthritis is complementary and alternative therapies, which are treatments that fall outside the scope of traditional medicine. Examples include naturopathic medicine, special herbs, acupuncture and meditation. These methods are not a substitute for the medications mentioned above. Before you try any of these treatments, always inform your health-care provider of any complementary and alternative therapies you are taking, receiving or would like to try. Your health-care provider can offer valuable advice about these treatments.
For further information, refer to The Arthritis Society's Complementary and Alternative Therapies Guide [PDF].
Those with severe, advanced AS may require surgery for badly damaged joints. Surgery usually involves replacing a joint with an artificial joint. This is most commonly used for the end stage of damage to the hip joints, called a total hip joint replacement. Benefits include less pain, better movement and restored function. Spinal surgery is complex and is only used in those with severe deformity.
WHAT QUESTIONS SHOULD I ASK MY DOCTOR?
Patients who learn more about their treatment program and talk to their doctor about it tend to report fewer symptoms, including less pain and greater mobility.
Be sure to talk with your doctor about your AS and ask questions about the disease and the different kinds of treatments. Before making a decision, you should understand what you can expect from a medication, what its possible side effects are and other important information. Also, ask what steps you can take to get your disease under control.
To help you get started, here are some common questions you may want to ask about AS treatment:
- What local resources are available so I can better educate myself about AS?
- Should I be referred to a physiotherapist or occupational therapist?
With regard to my medications:
- What are the possible side effects and how often do they occur?
- What should I do to minimize the chances of side effects?
- How can I keep track of the blood test results used to monitor me?
- How will I know if the drug is working, and how long will this take?
- Who do I contact if I have concerns about the medication?
- Are there drugs that I should stop taking now that I am beginning this new treatment?