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Ankylosing spondylitis

How to track ankylosing spondylitis symptoms between appointments

Reviews can be months apart. A routine for the time in between — what to record, when, and how to condense it before you walk in.

Rheumatology follow-ups are often three, six or twelve months apart. Everything that happens in between is what the appointment is about — and most of it will be gone from memory by the time you sit down.

The problem with recall

Asked how the last four months have been, most people describe the last two weeks and the single worst episode. That is how memory works, not a personal failing. But it means a clinician is often deciding on the basis of a distorted sample. A record does not have that bias: a bad week in March weighs the same as a bad week last Tuesday.

A routine that survives real life

  1. Pick a fixed moment

    Morning, with coffee, before the day starts. Stiffness is easiest to judge then, and a fixed slot is what turns tracking into a habit rather than a decision.

  2. Record the same five things

    Morning stiffness duration, spinal pain, other joint pain, fatigue and sleep — each as a quick scale. The what to track guide explains why these five.

  3. Add context only when something changed

    A new medication, a missed dose, a heavy training week, a cold, a long journey. One line. On an ordinary day, skip it.

  4. Mark flare start and end

    When a stretch feels like a flare, note the day it started and, later, the day it settled. Two dates are worth more than a paragraph. See the flare tracker guide.

  5. Complete a BASDAI at intervals

    Monthly, or whenever your team asks. The score over time is a trend a clinician can read directly. Use the BASDAI calculator or track it inside HAVYT.

  6. Summarise the week before the appointment

    Look back over the whole period, not the last fortnight. Write down the direction, the worst stretch and what changed. That page is the appointment.

What a clinician can actually use

Clinicians work from trends and from specifics, not from every entry. Assembling the record into a short summary is the step that makes months of tracking usable in a short slot.

The one-page summary

  • Overall direction since the last review: better, worse, or the same — and roughly since when.
  • Average and worst morning stiffness, in minutes, over the period.
  • Any flares: start date, duration, what you did during them.
  • BASDAI scores by date, if you have them.
  • Medication as actually taken, including anything missed or added, and any side effects noticed.
  • New symptoms outside the spine — eyes, gut, skin, other joints — with dates.
  • What you want from this appointment: the two or three questions that matter most.

HAVYT’s Doctor Report builds most of this automatically from what you recorded, for whatever date range you choose, and is honest about gaps: days with no entry are shown as days with no data.

If you have been assessed but not yet diagnosed

Diagnosis of axial spondyloarthritis is a clinical process involving history, examination, blood tests and imaging; NICE’s guideline describes the features that should prompt referral, including back pain that started before 45 and has lasted more than three months (NICE NG65). A record of when symptoms occur — particularly whether pain and stiffness are worse in the second half of the night and in the morning, and whether they ease with movement — is useful information to bring, but it is not a diagnosis and HAVYT cannot provide one.

Sources

  1. Ankylosing spondylitis: overviewNHS
  2. Ankylosing spondylitis: diagnosisNHS
  3. NG65 — Spondyloarthritis in over 16s: diagnosis and managementNICE, 2017, updated 2025
  4. The Bath Indices: outcome measures for use with ankylosing spondylitis patients (BASMI, BASFI, BASDAI, BAS-G)National Axial Spondyloarthritis Society (NASS)
  5. How can I prepare for a doctor’s appointment if I have arthritis?Versus Arthritis, 2023

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