FAQ
The term axial spondyloarthritis (axSpA) includes ankylosing spondylitis (AS; radiographic) and non-radiographic axial spondyloarthritis (nr-axSpA). It is usually diagnosed in young adults between 20 and 30 years of age.
The disease can be more common in certain families. A person’s risk of developing axSpA is increased if a first-degree relative (parent, sibling, or child) has axSpA. The presence of a gene called human leukocyte antigen (HLA)-B27 also increases the risk of developing axSpA.
Smoking is the single most important risk factor for developing more severe diseases that you can change. If you are a smoker and have been diagnosed with axSpA, you should try to quit as soon as possible. Your healthcare provider can help you make a plan to quit.
Reference
Yu DT, van Tubergen A. Patient education: Axial spondyloarthritis, including ankylosing spondylitis (Beyond the Basics). www.uptodate.com/contents/axial-spondyloarthritis-including-ankylosing-spondylitis-beyond-the-basics
Common features of spondyloarthritis (SpA) include inflammatory back pain, as well as pain and inflammation in the pelvis, neck, intestine, eyes, heels, and various larger joints. Most patients complain of spinal pain and limited spinal flexibility.
- Spinal pain. Spinal pain, almost always in the lower back, is usually the first and most common symptom of axial SpA (axSpA). The pain generally has some of the following characteristics:
- Begins in early adulthood (before 45 years of age)
- Has a gradual onset, rather than a sudden onset after an acute injury or a disc problem
- Lasts longer than three months
- Is worse after rest (eg, in the morning)
- Improves with activity
- Wakes you up in the second half of the night
- Can cause morning stiffness lasting more than 30 minutes
- Can be associated with buttock pain that alternates between the left and right sides
- Limited spinal flexibility. Limited flexibility of the back and neck is more severe in ankylosing spondylitis (AS) than with non-radiographic axSpA (nr-axSpA). In AS, the degree of inflexibility ranges from minor to complete inflexibility. Limitations in flexibility of the back and neck can make it hard to do normal daily activities, such as putting on shoes and stockings. The most serious consequence is developing an irreversible head-forward “hunchback” posture. More normal posture can often be maintained by regularly performing posture training exercises.
Note: You can test yourself for a hunchback posture by standing against a wall, with your back and heels touching the wall. Normally it is possible to touch the wall with the back of the head while keeping the chin parallel to the floor. If you cannot touch the wall with the back of the head, this indicates that you have a significant head-forward hunchback posture. If you are not already doing physical therapy and posture training to help with this, your doctor can help you get started.
Other symptoms of axSpA can include:
- Fatigue and sleeplessness. Inflammation in axSpA can affect the entire person, causing fatigue and sleeplessness.
- Anxiety and depression. These problems sometimes affect people with axSpA.
- Hip pain. Arthritis of the hips is relatively common in AS; it is much less common in nr-axSpA. Hip arthritis can cause pain in the groin or buttocks or difficulty walking.
- Heel pain. The heel is a common area of inflammation, which can cause pain at the back of the heel (Achilles tendinitis) and in the sole of the foot (plantar fasciitis).
- Shoulder pain. Inflammation of the tendon and bone may cause shoulder pain and limited mobility of the affected shoulder(s).
- Arthritis in other joints. Pain, stiffness, and swelling of other joints may occur. Arthritis may affect a single joint (monoarthritis) or a few joints (oligoarthritis). This is mainly seen in the hips, knees, ankles, heels, and feet.
- “Sausage-digits.” Sausage-shaped swelling can affect one or several toes and fingers.
- Other organs. Body systems other than the joints can be affected.
The combination of symptoms varies from person to person. The diagnosis of AS or nr-axSpA must be made by a clinician and cannot be made using an itemized checklist. A diagnosis depends on the combination of symptoms, signs, laboratory test results, and imaging findings.
References
Spondylitis Association of America. About spondylitis—overview. www.spondylitis.org/Overview
Yu D, van Tubergen A. Patient education: Axial spondyloarthritis, including ankylosing spondylitis (Beyond the Basics). www.uptodate.com/contents/axial-spondyloarthritis-including-ankylosing-spondylitis-beyond-the-basics
Ultimately, the diagnosis of axial spondyloarthritis (axSpA) must be made by an experienced clinician and is based upon a combination of symptoms, physical examination, blood tests, and imaging tests such as X-ray and magnetic resonance imaging (MRI). Based on the results, a clinician can assign a degree of probability to whether or not axSpA is causing your symptoms. The diagnosis cannot be made by ticking a checklist.
For some people, observations for months or years might be necessary before a clinician can be confident of the diagnosis. In general, axSpA should be considered if you have daily back pain for more than three months that starts before the age of 45, especially if this back pain is predominantly present in the morning and improves after movement.
- Blood tests. There are no blood tests that, by themselves, can definitively diagnose or exclude axSpA. However, testing for the presence of one particular type of the human leukocyte antigen (HLA) gene—HLA-B27—can be helpful in certain people. AxSpA is less likely in a person with a negative test for HLA-B27 who is white and of European descent. Although tests for proteins called “acute phase reactants” are sometimes helpful, they are not diagnostic for axSpA. These tests, which are markers of inflammation in the body, include C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) tests.
- Imaging tests. People with axSpA develop characteristic changes in the sacroiliac joints. These are the joints that connect the base of the spine (sacrum) to the large pelvic bone (ilium) on both sides. In ankylosing spondylitis (AS), these changes can be seen on radiograph (X-ray) images.
Imaging tests such as magnetic resonance imaging (MRI) detect the disease earlier than plain X-rays. In non-radiographic axSpA (nr-axSpA), findings suggesting inflammation in the sacroiliac joints may be present on MRI when the X-rays are negative. The interpretation of both X-ray and MRI findings requires training and, to a certain extent, is observer-dependent. Two clinicians might not agree on the same X-ray or MRI. Imaging tests should always be interpreted in the context of the symptoms, physical examination, and blood tests.
In people already diagnosed with AS, radiographs of the vertebrae are also useful in assessing the degree of structural damage to the spine.
Reference
Yu D, van Tubergen A. Patient education: Axial spondyloarthritis, including ankylosing spondylitis (Beyond the Basics). www.uptodate.com/contents/axial-spondyloarthritis-including-ankylosing-spondylitis-beyond-the-basics
- Nonsteroidal antiinflammatory drugs (NSAIDs). NSAIDs are commonly used to control pain and stiffness. NSAIDs available without a prescription include aspirin, ibuprofen, and naproxen; celecoxib is an example of a prescription NSAID. These agents need to be taken on a regular basis for several weeks before their maximum effect can be judged. If one NSAID is not effective, your doctor might try another one.
- Opioids. Opioids (narcotics) are a group of medications that can relieve pain in certain situations. Opioids can cause side effects, some of which can be serious. They can also lead to misuse and addiction in some people. In general, people with axSpA and chronic pain should not use opioids. You should only take them if your clinician has prescribed them after a detailed discussion about their relative risks and benefits.
- Glucocorticoids (steroids). Some clinicians may also recommend a glucocorticoid (steroid) injection into particularly painful or swollen joints, especially if only one or two areas are causing the most pain. Glucocorticoid injections might also be helpful for inflammation of a tendon, bursa, or the sacroiliac joints. However, oral glucocorticoids (pills) are not part of the treatment of axial spondyloarthritis (axSpA).
- Sulfasalazine and methotrexate. Sulfasalazine is a disease-modifying antirheumatic drug (DMARD) that may be prescribed for people with axSpA who also suffer from peripheral arthritis (affecting joints outside the spine). This drug provides some relief of arthritis symptoms but is not helpful for axial (spine) symptoms. It may be given along with NSAIDs. Methotrexate might also be effective for peripheral arthritis but is not for axial symptoms.
- Anti-tumor necrosis factor therapy. Medications known as anti-tumor necrosis factor (anti-TNF) agents (or TNF inhibitors) are often effective in the treatment of axSpA. Examples of anti-TNF medications include infliximab, etanercept, adalimumab, certolizumab pegol, and golimumab. People who do not respond to one anti-TNF treatment may respond to another. Improvement in symptoms is common and may occur within a few weeks of starting the drugs.Not every person with axSpA needs anti-TNF therapy. In general, people with active disease in the spine who have not responded fully to NSAIDs may be candidates.
- Interleukin 17A inhibitors. Secukinumab and ixekizumab are interleukin 17A inhibitors that may be treatment options for people who do not respond adequately to anti-TNF therapy. Secukinumab and ixekizumab can also be used as a first biologic treatment for AS, especially in people who are not candidates for a TNF-blocker therapy for other reasons.
- Surgery. Hip or spine surgery may be beneficial in some people with axSpA.
Reference
Yu D, van Tubergen A. Patient education: Axial spondyloarthritis, including ankylosing spondylitis (Beyond the Basics). www.uptodate.com/contents/axial-spondyloarthritis-including-ankylosing-spondylitis-beyond-the-basics
Symptom management approaches for ankylosing spondylitis (AS) and non-radiographic axial spondyloarthritis (nr-axSpA) are similar.
- Physical therapy, exercise, and posture training. It is best to start exercising as soon as possible after being diagnosed with axSpA and to continue exercising regularly. Exercise should be part of the treatment program for everyone with axSpA. It can include home exercises, individual or group exercise with a physical therapist, or individual physical therapy treatments. Exercises can be “land-based” or performed in a pool, with or without additional therapies. Optimally, you should be evaluated and given instructions by a physical therapist and be monitored periodically.
Because axSpA can lead to the spine becoming “frozen” in an awkward posture, posture training is very important. Modern sedentary life often involves sitting in a slumped posture in front of a computer, which causes shortening of the muscles at the back of the thighs, tilting of the hips forward, weakening of the muscles of the upper back, and a tendency to bend and hold the neck and head too far forward.
- Safety issues. A fused, immobile, inflexible spine is more easily fractured than a normal spine. Because of the increased risk of serious spinal injury from even minor falls or other accidents, people with axSpA with an inflexible spine should take care to avoid such mishaps. Safety measures you can take include:
- Limiting the amount of alcohol you drink; narcotic pain-relieving drugs (such as codeine) and sedatives (sleeping pills) should be used cautiously, if at all, since they also increase the risk of falling.
- Modifying your home to decrease your risk of falling. Shower or tub grab-bars and nightlights decrease the chance of a fall. Remove or secure loose rugs, and keep walkways free of clutter, electrical cords, and other things that could trip you.
- Taking precautions in the car. Seatbelts reduce the risk of injury in a car crash and should always be worn while driving or riding in a vehicle. A wraparound rearview mirror can improve visibility while driving if you cannot turn your head and neck.
- Using a thin, rather than thick, pillow for sleeping to avoid developing deformities of the neck.
- Avoiding contact sports and other high-impact activities if you have an inflexible spine.
- Performing fall-prevention exercises as part of your exercise program.
- Diet. There are no special dietary recommendations for axSpA other than maintaining a healthy diet. There is a lack of evidence for a benefit from taking probiotics.
Reference
Yu D, van Tubergen A. Patient education: Axial spondyloarthritis, including ankylosing spondylitis (Beyond the Basics). www.uptodate.com/contents/axial-spondyloarthritis-including-ankylosing-spondylitis-beyond-the-basics
Some sample questions are listed below to help you begin the conversation with your clinician about your condition.
- Will my symptoms get worse?
- What is the typical progression of this disease?
- What are the chances my kids will have it?
- What tests should I expect?
- How do I explain this disease to the people in my life?
- Should I see a therapist to adjust to living with a chronic illness?
- What kinds of activities should I engage in, and which should I avoid?
- Should I stop working?
- Are there dietary changes that could help?
Support groups for axial spondyloarthritis are available. Participating in a support group can be a helpful coping strategy, especially if you are struggling with your condition and how it has impacted your life. The weblinks below provide information for finding a support group near you.
Creaky Joints. https://creakyjoints.org/support/arthritis-support-groups/
Spondylitis Association of America. www.spondylitis.org/Support-Groups