How to prepare for outpatient appointments

For patients with axial spondyloarthritis (axial SpA) appointments with your rheumatology consultant may come around only every few months, once a year, sometimes longer. This means face-to-face time with your most knowledgeable healthcare professional is very a precious commodity, and it's in your best interests to be as prepared as you can be going into every appointment.

When preparing for an appointment with a consultant regarding axial spondyloarthritis (axial SpA), there are several key considerations to ensure the consultation is as productive and informative as possible:

1. Document Your Symptoms Thoroughly

   Pain and Stiffness: Start by maintaining a daily log that tracks your pain levels, stiffness, and other symptoms. Note the specific locations of pain, whether it’s in your lower back, hips, or other joints. Also, describe the type of pain (sharp, dull, throbbing) and its duration. Pay attention to when your stiffness is most severe, particularly in the morning or after periods of inactivity, as this can be a key indicator of axial SpA.
   Fatigue: axial SpA often causes chronic fatigue, which can severely impact your quality of life. Documenting how often you feel fatigued, its severity, and how it affects your daily activities will give your consultant valuable insights into how the disease is affecting you beyond just physical pain.
   Impact on Daily Life: Consider keeping notes on how your symptoms interfere with everyday tasks like walking, sitting, or sleeping. This will help your consultant understand the practical challenges you face and tailor your treatment plan accordingly.

1. Prepare a Medical History

   Past Diagnoses and Treatments: Bring a detailed history of any previous diagnoses related to musculoskeletal issues, especially those involving chronic back pain. If you have been diagnosed with other inflammatory conditions, such as psoriasis or inflammatory bowel disease, mention these, as they are often associated with axial SpA.
   Family History: If possible, gather information on any family history of autoimmune diseases or inflammatory arthritis. axial SpA has a genetic component, and knowing whether conditions like ankylosing spondylitis, rheumatoid arthritis, or Crohn’s disease run in your family can provide your consultant with crucial context.
   Relevant Test Results: Bring any recent blood tests, especially those that measure inflammatory markers like C-reactive protein (CRP) or erythrocyte sedimentation rate (ESR), and imaging studies such as X-rays or MRIs. These results are essential for tracking disease progression and determining the effectiveness of your current treatment plan.

1. List Current and Past Medications

   Current Medications: Compile a list of all medications you’re currently taking, including dosages, frequency, and how long you’ve been on them. Be sure to include over-the-counter drugs, supplements, and any homeopathic remedies.
   Efficacy and Side Effects: Be prepared to discuss how effective these medications have been in managing your symptoms. Have you noticed any improvement in pain, stiffness, or mobility? Equally important is to note any side effects you’ve experienced, as this might prompt your consultant to adjust your treatment plan or explore alternative options.
   Medication History: If you’ve tried other treatments in the past, note why they were discontinued (e.g., side effects, lack of efficacy). This helps your consultant understand what has and hasn’t worked for you and guides future treatment decisions.

1. Research and Prepare Questions

   Potential Treatments: Research treatment options, including biologics, NSAIDs, and physical therapy. Prepare questions about the benefits and risks of each, and ask how they might fit into your treatment plan. For example, if considering biologics, inquire about the expected timeline for noticing improvements and the monitoring required.
   Diagnostic Clarifications: If you have concerns about your diagnosis, ask about additional tests that could confirm it or rule out other conditions. You might want to discuss the role of MRI in detecting early inflammation, especially if you have non-radiographic axial SpA.
   Lifestyle Modifications: Ask for advice on lifestyle changes that could help manage your symptoms. This could include specific exercises, dietary recommendations, or strategies to improve sleep and reduce stress, which are crucial in managing a chronic condition like axial SpA.
   

1. Consider Bringing a Support Person

   Emotional Support: Bringing a family member or friend can provide emotional support during your appointment, especially if you find discussions about your health stressful. They can also help by taking notes and ensuring that you don’t forget any important details discussed during the consultation.
   Advocacy: Sometimes, having someone else present can help in advocating for your needs, asking questions you might not think of, or helping you remember to ask about specific concerns you’ve discussed beforehand. This can be particularly useful if you’re considering changes to your treatment plan or need to discuss complex topics like the long-term management of axial SpA.

1. Understand the Next Steps

   Follow-Up Appointments: Before leaving your appointment, make sure you know the timeline for any follow-up consultations. This might include regular check-ins to monitor your response to a new treatment or additional tests to track disease progression.
   Tests and Referrals: If your consultant recommends additional tests, such as blood work or imaging studies, clarify when and where these will be done and when you can expect the results. Similarly, if referrals to other specialists (e.g., a physical therapist or gastroenterologist) are suggested, ensure you understand the process and next steps.
   Actionable Plan: Make sure you leave the appointment with a clear, actionable plan for managing your axial SpA. This should include any changes to your medication, recommendations for lifestyle adjustments, and a schedule for follow-up appointments.

By thoroughly preparing in these ways, you can ensure that your consultation is productive, enabling you and your consultant to collaboratively manage your axial spondyloarthritis effectively. For more detailed information and further resources, you can explore Verywell Health’s guide on axial SpA and MySpondylitisTeam’s checklist for consultations.