Ankylosing Spondylitis

Ankylosing Spondylitis, often shortened to AS, is a long-term, chronic inflammatory disease that primarily affects the spine, but can also impact other joints and organs in the body. It belongs to a group of conditions known as spondyloarthritis. While the spine is the main target, leading to pain and stiffness, AS can also cause inflammation in areas where tendons and ligaments attach to bone, known as enthesitis, and in other joints like the hips, shoulders, and even the eyes. Living with AS can be challenging, as the symptoms can vary greatly from person to person and fluctuate in severity. However, with a proper understanding of the condition and effective management strategies, individuals can lead fulfilling lives. 

This detailed guide aims to provide clear, accessible information about Ankylosing Spondylitis, helping you better understand this condition and empowering you to take an active role in your health.

Ankylosing Spondylitis is a type of inflammatory arthritis that chiefly affects the axial skeleton – this includes the spine and the sacroiliac (SI) joints, which connect the base of your spine to your pelvis. The term "ankylosing" refers to the tendency of affected joints to fuse or grow together, leading to a stiff and immobile spine, often described as a "bamboo spine" in advanced cases. "Spondylitis" means inflammation of the vertebrae, the small bones that make up your spine.

This chronic inflammation causes pain, stiffness, and reduced flexibility, particularly in the lower back, buttocks, and neck. Over time, the continuous inflammation can lead to new bone formation, causing the vertebrae to fuse. This fusion can significantly limit a person's range of motion and impact their posture. Beyond the spine, AS can also affect other parts of the body, including the peripheral joints (such as the hips, shoulders, and knees), eyes (leading to uveitis or iritis), bowels (inflammatory bowel disease), and, rarely, the heart and lungs.

The prevalence of Ankylosing Spondylitis is about three times more common in men than in women, although women can also be affected, sometimes with a milder or less typical presentation. The onset of symptoms typically occurs in the late teens or early twenties, usually before the age of 45.

While "Ankylosing Spondylitis" is often used as a general term, it's actually part of a broader category of conditions called axial spondyloarthritis (axSpA). AxSpA itself is typically divided into two main types:

• Radiographic Axial Spondyloarthritis (AS): This is the classical form of Ankylosing Spondylitis, where changes to the sacroiliac joints and spine are visible on conventional X-rays. These changes usually involve evidence of bone damage or fusion.
• Non-radiographic Axial Spondyloarthritis (nr-axSpA): In this type, individuals experience similar symptoms of inflammatory back pain, but the changes to the joints are not yet visible on X-rays. However, inflammation may be seen on a more sensitive imaging test, such as an MRI scan. It's important to note that some people with nr-axSpA may eventually develop radiographic changes and be diagnosed with AS.

Although these are distinct classifications, the symptoms and treatment approaches for both are quite similar, focusing on managing inflammation, pain, and stiffness.

The exact cause of Ankylosing Spondylitis isn't fully understood, but it's believed to be a complex interplay of genetic and environmental factors. Here's what researchers currently know:

Genetic Predisposition: The strongest genetic link is to a gene called HLA-B27. While around 90% of people with AS carry the HLA-B27 gene, it's crucial to understand that not everyone with this gene will develop AS. In fact, many people with HLA-B27 never experience the condition. This suggests that other factors must also be at play.

Immune System Dysfunction: AS is an autoimmune disease, meaning the body's immune system mistakenly attacks its own healthy tissues, leading to chronic inflammation. The specific triggers for this immune system malfunction are still being investigated.

Environmental Triggers: It's thought that certain environmental factors, possibly infections, could act as a trigger in genetically predisposed individuals, leading to the onset of AS. However, no single environmental trigger has been definitively identified.

Gut Microbiome: Emerging research suggests a potential link between the gut microbiome (the community of bacteria in the intestines) and the development and progression of AS. This is an active area of study.

It's clear that AS is not caused by lifestyle choices, injuries, or diet alone. It's a complex condition with a strong genetic component, where the immune system plays a central role.

The symptoms of Ankylosing Spondylitis can vary significantly from person to person and in severity. They often develop gradually over several weeks or months. The hallmark symptoms typically include:

• Chronic Back Pain and Stiffness: This is usually the most prominent symptom, particularly in the lower back and buttocks. The pain is often worse in the morning or after periods of inactivity and tends to improve with exercise and movement. It can also wake you up during the night.
• Pain in the Sacroiliac (SI) Joints: These joints, located at the base of the spine where it meets the pelvis, are frequently affected early on, causing pain in one or both buttocks.
• Neck Pain and Stiffness: The inflammation can spread up the spine, leading to pain and limited movement in the neck.
• Enthesitis: This is inflammation where tendons and ligaments attach to bone. Common sites include the heels (Achilles tendonitis), soles of the feet (plantar fasciitis), and ribs, causing pain and tenderness.
• Peripheral Arthritis: Joints other than the spine, such as the hips, shoulders, knees, and even fingers and toes, can become inflamed, leading to pain, swelling, and reduced range of motion.
• Fatigue: Extreme tiredness is a common and often debilitating symptom, likely due to the chronic inflammatory process.
• Uveitis/Iritis: Inflammation of the eye, causing pain, redness, sensitivity to light, and blurred vision. This is a significant extra-articular (outside the joint) manifestation.
• Inflammatory Bowel Disease (IBD): Some individuals with AS may also develop conditions like Crohn's disease or ulcerative colitis.
• Psoriasis: A skin condition characterised by red, scaly patches, which can sometimes co-occur with AS.
• Chest Pain: If the joints between the ribs and spine are affected, it can cause chest pain and make deep breathing difficult.

Diagnosing Ankylosing Spondylitis can sometimes be a lengthy process because its early symptoms can be mistaken for more common back problems. There isn't a single definitive test for AS; instead, doctors rely on a combination of assessments:

Medical History and Physical Examination: 

Your doctor will ask about your symptoms, including when they started, their severity, and what makes them better or worse. They will also perform a physical examination to check for tenderness in your spine and joints, assess your spinal flexibility, and evaluate your posture.

Blood Tests:

• HLA-B27 Gene Test: As mentioned, the presence of the HLA-B27 gene is strongly associated with AS, but it doesn't confirm a diagnosis on its own.
• Inflammation Markers: Blood tests for C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) can indicate inflammation in the body, although these are not specific to AS.

Imaging Tests:

• X-rays: These are often used to look for characteristic changes in the sacroiliac joints and spine, such as erosions, fusion, and squaring of the vertebrae. However, early changes might not be visible on X-rays.
• MRI Scans: Magnetic Resonance Imaging is more sensitive than X-rays and can detect inflammation in the sacroiliac joints and spine even before structural damage is visible on X-rays, which is crucial for diagnosing non-radiographic axial spondyloarthritis.

A specialist, usually a rheumatologist, will typically consolidate these findings to make a diagnosis and rule out other conditions that might present with similar symptoms. Early diagnosis is key to starting treatment promptly and potentially slowing disease progression.

While there is currently no cure for Ankylosing Spondylitis, treatment aims to manage symptoms, reduce inflammation, prevent spinal fusion, maintain mobility, and improve quality of life. A multidisciplinary approach involving medication, physical therapy, and lifestyle adjustments is usually most effective.

Medication:

• Non-Steroidal Anti-Inflammatory Drugs (NSAIDs): These are often the first line of treatment to reduce pain and inflammation. Examples include ibuprofen, naproxen, and diclofenac.
• Disease-Modifying Anti-Rheumatic Drugs (DMARDs): While less effective for spinal inflammation, DMARDs like sulfasalazine may be used if peripheral joints (e.g., hips, knees) are significantly affected.
• Biological Therapies (Biologics): For individuals with persistent, active disease despite NSAIDs, biologics are a significant advancement. These targeted therapies block specific inflammatory proteins in the immune system. Examples include TNF inhibitors (e.g., adalimumab, etanercept, infliximab) and IL-17 inhibitors (e.g., secukinumab, ixekizumab).
• Janus Kinase (JAK) Inhibitors: These are newer oral medications that target specific pathways within immune cells to reduce inflammation.
• Corticosteroids: Steroid injections may be used to target specific inflamed joints or areas of enthesitis for short-term relief. Or, corticosteroids like Deflazacort (Brands available: Defcort, Defac) may be used to relieve the symptoms. . 

Physical Therapy: 

This is a cornerstone of AS management. A physiotherapist can design a tailored exercise programme to:

• Improve posture and spinal mobility.
• Increase flexibility and strength.
• Reduce pain and stiffness.
• Teach proper body mechanics and sleeping positions.
• Hydrotherapy (exercise in warm water) can also be highly beneficial.

Surgery: 

Surgery is rarely needed for AS but may be considered in specific cases:

• Joint Replacement: Particularly for severely damaged hip joints.
• Spinal Surgery: In very rare instances, to correct severe spinal deformity or to stabilise the spine if a fracture occurs.

Some alternative therapies that people with AS have found helpful include:

• Massage Therapy: Gentle massage can help to relieve muscle tension, reduce pain, and improve flexibility, particularly in the back and neck.
• Heat and Cold Therapy: Applying heat (e.g., warm baths, heating pads) can help relax stiff muscles and ease pain, especially in the morning. Cold packs can reduce swelling and inflammation in localised areas.
• Dietary Adjustments: While there's no specific "AS diet," some people find that certain foods exacerbate their inflammation. An anti-inflammatory diet, rich in fruits, vegetables, whole grains, and lean proteins, and low in processed foods and saturated fats, may be beneficial for overall health and could potentially help manage inflammation. However, more research is needed in this area specific to AS.
• Transcutaneous Electrical Nerve Stimulation (TENS): A small device that delivers low-voltage electrical currents to the painful area, which may help block pain signals.

Remember, these therapies are complementary and should not replace conventional medical treatment. Always consult your healthcare professional before starting any new alternative therapy.

Ankylosing Spondylitis has several known risk factors, although having these doesn't guarantee you'll develop the condition:

• Genetics: The presence of the HLA-B27 gene significantly increases the risk.
• Sex: Men are more likely to develop AS, especially the radiographic form.
• Age: Symptoms typically begin in late adolescence or early adulthood.
• Family History: Having a close relative with AS or another spondyloarthritis increases your risk.
• Ethnicity: AS is more common in certain ethnic groups, particularly Caucasians.

Left untreated or poorly managed, Ankylosing Spondylitis can lead to various complications:

• Spinal Fusion: Vertebrae can fuse, leading to a rigid, inflexible spine and significantly impaired mobility.
• Osteoporosis: Weakening of bones, increasing the risk of fractures, especially in the spine.
• Uveitis/Iritis: Recurrent inflammation of the eye, which can lead to vision problems if not treated.
• Cardiovascular Disease: Increased risk of heart attack, stroke, and inflammation of the aorta.
• Cauda Equina Syndrome: A rare but serious complication where spinal nerves are compressed, causing bowel/bladder dysfunction and leg weakness.
• Lung Fibrosis: Very rarely, scarring of the top of the lungs can occur.
• Spinal Fractures: Even minor trauma can cause fractures in a stiffened spine.

Living with a chronic condition like Ankylosing Spondylitis requires ongoing management and self-care. Here are five tips to help you live well:

• Stay Active Regularly: Even on days when you feel stiff or tired, gentle, consistent exercise like walking, swimming, or specific physiotherapy exercises can significantly improve your flexibility, reduce pain, and boost your mood.
• Prioritise Good Posture: Be mindful of your posture throughout the day, whether sitting, standing, or sleeping. Practicing good posture can help prevent spinal deformity and maintain mobility. A physical therapist can offer personalised advice.
• Manage Your Pain Effectively: Work closely with your doctor to find the right balance of medications and non-pharmacological approaches to manage your pain. Don't hesitate to communicate if your pain management strategy isn't working for you.
• Listen to Your Body and Rest: While staying active is important, it's equally vital to recognise when your body needs rest, especially during flare-ups. Pushing too hard can worsen symptoms.
• Seek Support and Education: Connect with support groups or organisations dedicated to AS. Sharing experiences and learning from others can be incredibly empowering and provide valuable coping strategies. Understanding your condition thoroughly empowers you to make informed decisions about your health.

"It's just bad back pain, everyone gets it." 

While back pain is common, AS pain is distinct. It's typically inflammatory, meaning it's worse with rest, improves with activity, often wakes you at night, and lasts longer than typical mechanical back pain. Ignoring persistent inflammatory back pain can lead to delayed diagnosis and irreversible damage.

"AS only affects older men." 

While AS is more prevalent in men and often diagnosed in early adulthood, it can affect women and children too. Women may experience symptoms differently, often with more peripheral joint involvement, which can sometimes lead to misdiagnosis or delayed diagnosis.

"Once diagnosed, your spine will definitely fuse into a 'bamboo spine'." 

This is not necessarily true for everyone. With early diagnosis and effective modern treatments, including biological therapies and dedicated physical therapy, the progression of spinal fusion can often be slowed or even halted in many individuals, allowing them to maintain better mobility and quality of life.

It's crucial to see a doctor if you experience persistent back pain, especially if it has the following characteristics:

• It started gradually and has lasted for more than three months.
• It's worse in the morning or after periods of rest.
• It improves with exercise and movement.
• It wakes you up during the second half of the night.
• It's accompanied by stiffness in the back or buttocks.
• You also have pain or swelling in other joints, particularly your hips, or experience eye inflammation (redness, pain, light sensitivity).
• You have a family history of Ankylosing Spondylitis or other similar inflammatory conditions.

• What are the key symptoms of Ankylosing Spondylitis, and do mine align with them?
• What tests will you perform to confirm or rule out a diagnosis of AS?
• What are the available treatment options for my specific case, and what are their potential side effects?
• What role will physical therapy play in my treatment plan, and can you recommend a specialised physiotherapist?
• Are there any lifestyle changes, such as diet or exercise, that I should consider to help manage my condition?
• What are the potential long-term complications of AS, and how can we monitor for them?

• Learn about AS, its symptoms, and how it can affect daily life. Understanding the challenges your loved one faces can help you offer more effective and empathetic support.
• During flare-ups, simple tasks can become difficult. Offer to help with chores, errands, or cooking. Even small gestures can ease their burden and show you care.
• Gently encourage them to stick to their exercise routine and medication schedule, as these are crucial for managing AS. Offer to exercise with them or remind them about appointments.
• AS can be unpredictable, with good days and bad days. Understand that their energy levels and ability to participate in activities may fluctuate. Listen without judgment and validate their feelings.

Ankylosing Spondylitis is a complex, chronic inflammatory condition that primarily affects the spine, causing pain, stiffness, and potentially leading to spinal fusion. While it presents significant challenges, advancements in diagnosis and treatment mean that individuals with AS can lead full and active lives. Early recognition of symptoms, timely diagnosis by a rheumatologist, and a comprehensive management plan involving medication, dedicated physical therapy, and healthy lifestyle choices are paramount. 

Understanding the nature of the disease, dispelling common misconceptions, and building a strong support network are all crucial elements in navigating the journey with Ankylosing Spondylitis effectively. Remember, you are not alone, and with the right care and support, you can manage your condition and maintain your quality of life.