Guidance and Resources for Those with Axial Spondyloarthritis

Axial spondyloarthritis (AxSpA) encompasses a group of inflammatory arthritis conditions primarily impacting the spine, though other joints and even organs can be involved. We invite you to discover more about this range of conditions, their diagnosis and treatment options, and ways you can manage them effectively.

Living with axial spondyloarthritis (AxSpA) presents daily hurdles. There are two main types: radiographic axSpA, also known as ankylosing spondylitis, visible on X-rays due to damage to the sacroiliac joints and spine, and nonradiographic axSpA (nr-axSpA) which might not show on X-rays but can be detected through MRIs. We're here to guide you with expert advice, resources, and support to navigate through your AxSpA journey and alleviate its symptoms.

Ankylosing Spondylitis

Young Person's Guide to Ankylosing Spondylitis

September 02, 20235 min read

Let's dive into understanding Juvenile Ankylosing Spondylitis (JAS). It's a form of inflammatory arthritis primarily targeting the spine, but it also affects the areas where tendons, muscles, and ligaments join the bone. Besides the joints, JAS can influence other body organs too. Interestingly, it's seen more frequently in boys and tends to be familial.

Now, what causes JAS? The true cause isn't entirely understood. However, a gene named HLA-B27 is often found in about 80-90% of children with JAS. But here's a crucial point: just having the gene doesn't guarantee developing JAS. Scientists think that JAS may emerge when kids with this gene encounter specific viruses or bacteria.

What does it feel like? JAS usually takes its time, appearing gradually over weeks or months. Initial symptoms might seem like enthesitis-related arthritis, which affects where tendons and muscles meet bone. It might start with pain in the hips or knees, eventually reaching the lower back. Some common symptoms include:

  • Pain, swelling, and warmth in various body parts like toes, knees, and neck.

  • Early morning back pain or stiffness.

  • Breathing difficulty and stooped posture.

  • Feeling exhausted, having a mild fever, or a loss of appetite.

Over time, the disease might cause the spine's bones to merge, making it rigid. Even the rib cage might get affected, making breathing harder.

Other areas JAS can touch upon:

  • Eyes: Chronic inflammation could cause issues like dryness, redness, or even difficulty in seeing.

  • Digestive Tract: One might experience abdominal pain and diarrhea due to inflammation.

Diagnosis isn't straightforward, as spinal symptoms might appear years after initial ones. If you start feeling joint pain, it's wise to consult a doctor. While a primary care physician might be your first point of contact, they might suggest seeing a rheumatologist, a specialist in this field.

To determine JAS, doctors consider:

  • Medical history.

  • Physical checks for joint issues and eye examinations.

  • Blood tests, including those for the HLA-B27 gene.

  • Imaging tests like X-rays or MRI to observe any damage.

Currently, there isn't a cure for JAS. However, treatments aim at:

  • Easing pain and stiffness.

  • Preventing spinal changes.

  • Averting joint and organ damages.

  • Keeping joints functional and mobile.

  • Enhancing life quality.

Starting treatment early and being proactive can minimize complications and joint issues. Treatments usually encompass medications, therapies, maintaining a healthy lifestyle, and in rare cases, surgery.


Treatments

Medications

If you or someone you know is navigating the path of Ankylosing Spondylitis (AS) treatment, here's a breakdown of some commonly prescribed medications, available in both pill and injection formats:

  • Nonsteroidal Anti-Inflammatory Drugs (NSAIDs):

    • These are often the go-to medications for JAS relief.

    • Examples? You've likely heard of or even used over-the-counter options like ibuprofen (think Advil) or naproxen (Aleve). Some stronger versions, like indomethacin, diclofenac, or celecoxib, might require a doctor's prescription.

  • Disease-Modifying Antirheumatic drugs (DMARDs):

    • A lot of young AS patients might receive a DMARD prescription. Why? To dampen disease flare-ups, soothe pain, and lessen swelling.

    • DMARDs like sulfasalazine and methotrexate function by gently reining in the immune system to prevent it from attacking our joints.

  • Biologics:

    • Think of these as a subset of DMARDs, specially tailored to target certain aspects of inflammation.

    • The way to get them? Some are self-administered injections, while others are given intravenously at a healthcare center.

  • Corticosteroids:

    • Need something to act fast? That's where corticosteroids, like prednisone, come into play.

    • However, they're typically prescribed for short durations and at minimal doses due to potential side effects, especially growth challenges in kids.

    • A little tip: They're more effective for arthritis in areas other than the spine.

Physical Therapy and Assistive Devices

A physical therapist can craft a tailored routine for you to boost strength and flexibility, ensuring your joints remain functional and your spine stays agile. Plus, if daily tasks seem challenging, occupational therapists are here to recommend handy tools and share advice to safeguard your joints and simplify everyday activities. Here's to making life a bit smoother!

Exercise

Staying active is a game-changer when it comes to managing JAS. Engaging in regular physical activities not only wards off stiffness but also maintains the flexibility of your spine and other joints. Always keep up with the regimen recommended by your physical therapist.

Looking for exercise suggestions? Low-impact activities like walking, swimming, biking, and yoga are fantastic choices. Plus, a good stretch, especially after a comforting warm bath or shower, can be a delightful way to alleviate pain and tackle stiffness.

Surgery

The majority of kids with JAS won't ever require surgery. However, in some cases, joint replacement or spinal corrective procedures can be beneficial in alleviating pain and discomfort from joint fusion

Self-Care

When it comes to JAS, there isn't a specific diet etched in stone. However, embracing the wholesome foods from the Mediterranean menu, like fatty fish, fresh fruits, veggies, whole grains, and a drizzle of extra virgin olive oil, can be beneficial. And guess what? Cutting back on those sugary, fatty, and processed munchies can make a difference too!

A small tip for comfort: Maintaining a good posture. Set up your workspace so your computer monitor meets your gaze. Remember to switch between sitting and standing, and if your back feels achy, a cushion might be your new best friend. Also, when checking messages on your phone, keep it at eye level to avoid the infamous "texting neck".

Having JAS can sometimes weigh on one's emotions, but the silver lining? A supportive circle of friends and family. Moreover, kids with JAS can connect with peers at the Arthritis Foundation's JA events that occur throughout the year.

For teens, there's the Foundation’s iPeer2Peer program. It pairs up a young adult mentor with arthritis experience with a teen going through the same journey. And for those tougher days? Therapists and psychologists are there, ready to lend an ear, helping kids navigate emotions and offering uplifting coping tools.


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