Spondyloarthritis (SpA) isn’t just a medical condition; it’s a daily challenge that affects both physical and mental well-being. SpA encompasses a wide range of disorders, including axial spondyloarthritis, non-radiographic axial spondyloarthritis, psoriatic arthritis, enteropathic arthritis, and others. These conditions cause inflammation, leading to pain, stiffness, and potentially long-term damage to the joints and/or spine. Understanding and tracking disease activity is crucial for effective management and treatment of spondyloarthritis. This article provides an overview of the key measures people living with SpA should track and discuss with their rheumatologists and medical care team.
Key Disease Activity Measures
Patient-Reported Outcome Measures (PROMs)
PROMs are questionnaires that patients complete to provide insights into their health status. They cover aspects like pain severity, function, and quality of life, and they allow researchers to better understand the experiences of those with the disease. Regularly completing these questionnaires can help researchers track changes over time and understand the impact of treatment.
Some examples of PROMs include:
Ankylosing Spondylitis Disease Activity Score (ASDAS)
ASDAS combines patient-reported outcomes with inflammatory markers such as C-reactive protein (CRP) or erythrocyte sedimentation rate (ESR). This score provides a comprehensive view of disease activity, including both subjective measures (how a person feels, such as degree of pain) and objective measures (factual information, such as CRP levels).
Laboratory Measures and Biomarkers
Inflammatory markers like CRP and ESR are blood tests that help assess the level of inflammation in the body. Fluctuations in these levels can indicate changes in disease activity. Regular monitoring, as recommended by your rheumatologist, is crucial for assessing response to treatment.
Imaging Techniques
X-rays, MRI, and ultrasound are imaging techniques used to show joint and spine changes. These images can reveal inflammation and damage and can show whether the disease has been stable or progressed.
Consult with a healthcare provider for personalized recommendations on the frequency of x-ray imaging, which varies depending on the severity of the disease as well as other individual factors. The American College of Rheumatology (ACR), Spondylitis Association of America (SAA), and SPARTAN guidelines recommend against any specific interval for x-ray imaging. In addition, the guidelines do not recommend MRI for monitoring unless the clinician is unsure about disease activity using other assessments.
Functional and Mobility Assessments
Physical function and mobility are critical to assess, often using tools like the Bath Ankylosing Spondylitis Functional Index (BASFI). These assessments help in determining the impact of the disease on movement and may help guide physiotherapy or exercise recommendations. You can find the BASFI here: https://basdai.com/BASFI.php
Frequency of Monitoring
The frequency of monitoring disease activity varies depending on individual disease severity and response to treatment. Generally, it is recommended to have:
Future and Emerging Measures
Research is ongoing to develop new tools for measuring disease activity in spondyloarthritis. These may include novel biomarkers or advanced imaging techniques, offering more precise assessments in the future.
Navigating Treatment Adjustments
One of the key reasons to track disease activity is to guide treatment adjustments. As spondyloarthritis can fluctuate in intensity, your medication regimen may need to change over time. Tracking symptoms and test results provides you and your rheumatologist with data to make shared decisions about modifying treatments. This could include changing dosages, introducing new medications, or considering advanced therapies like biologics.
The Role of Lifestyle in Disease Management
In addition to medical treatments, lifestyle factors play a significant role in managing spondyloarthritis. Exercise, particularly activities that enhance flexibility and strength, is crucial. Your rheumatologist or a physical therapist can suggest exercises tailored to your condition. SAA also has several resources on our website. Diet also plays a role; although there’s no specific diet for spondyloarthritis, a balanced diet rich in anti-inflammatory foods can help manage symptoms. Additionally, smoking cessation is vital, as smoking can exacerbate symptoms and hinder treatment effectiveness.
Managing Flare-ups
Understanding how to manage flare-ups — periods when symptoms intensify — is essential. Tracking your disease activity can help identify triggers or early signs of a flare-up. This enables you to take proactive steps, such as adjusting your activity level, employing relaxation techniques, or consulting your rheumatologist for a potential treatment adjustment.
Importance of Mental Health
Living with a chronic condition like spondyloarthritis can be challenging, not just physically but also emotionally. It’s important to acknowledge and address the psychological impact. Consider support from mental health professionals, support groups, or online forums where you can connect with others facing similar challenges.
Keeping a Disease Activity Journal
A practical way to track your disease activity is by maintaining a journal. Record your symptoms, medication changes, exercise routines, diet, and emotional well-being. This journal can be a valuable tool during appointments, providing a comprehensive picture of your health over time.
You may prefer to use apps intended to serve the same purpose as a disease activity journal, such as MySpA (for people living with any type of spondyloarthritis) and GRAPPA (for people living with psoriasis and psoriatic arthritis). SAA doesn’t endorse any particular app, nor is there any app widely accepted by the rheumatology community. Nonetheless, you may find such apps useful.
Building a Support System
Having a dedicated support system is invaluable. This includes not only medical professionals but also family, friends, and support groups. They can provide emotional support, help with daily tasks during flare-ups, and assist in maintaining a healthy lifestyle.
Want to connect with others who share similar experiences? SAA Educational Support Groups are a great way to build your community of support. Find out more here: https://spondylitis.org/resources-support/support-resources/support-groups/
Staying Informed
Lastly, staying informed about spondyloarthritis is important. Research on this condition is ongoing, and new treatments and management strategies are continually emerging. Discuss these developments with your rheumatologist and stay engaged with reliable sources of information.
Tracking disease activity in spondyloarthritis is a collaborative effort between you and your rheumatologist. Regularly monitoring symptoms, completing PROMs, undergoing laboratory tests, and having imaging when needed are all crucial components of managing your condition. Staying informed and actively participating in your care will help achieve the best possible outcomes. Remember, effective disease management is a journey that you and your healthcare team embark on together.
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