A rheumatology review can be ten or fifteen minutes, months apart. Almost all of its value depends on what you bring into the room — and "how have things been?" is a much better question when the answer is on a page rather than in recall.
Before you start: what do you want from this appointment?
Versus Arthritis’s advice from a consultant rheumatologist starts here: be clear about what you want from the appointment, because you may not get everything in one visit (Versus Arthritis). Write down your two or three most important questions and put them at the top. Everything else is supporting material.
What to bring
Patient organisations on both sides of the Atlantic give similar lists (Versus Arthritis; American College of Rheumatology). Adapted for ankylosing spondylitis and axial spondyloarthritis:
The appointment checklist
- Your questions, in priority order. Two or three.
- A one-page symptom summary for the period since the last review: overall direction; average and worst morning stiffness (in minutes); spinal and other joint pain scores; fatigue; sleep; any flares with start dates and durations.
- BASDAI scores by date, if you have been tracking them. A trend is far more useful than one number. See understanding BASDAI.
- Medication as actually taken: everything, including over-the-counter medicines and supplements; any missed or late doses; any change and when; anything you noticed after a change.
- New symptoms outside the spine, with dates: eyes (pain, redness, light sensitivity), gut, skin, other joints, heels or chest wall.
- Anything that changed in your life that might be relevant: work, training, sleep, a new job, an injury, an illness.
- Recent results or letters from other clinicians, if the rheumatology team may not have them.
- A way to take notes, or someone to come with you.
The printable rheumatology appointment checklist is this list laid out for a single page.
Condensing months into a page
Clinicians work from trends and specifics, not from every entry. If you have been keeping a daily record — see tracking AS between appointments — the summary is a matter of reading it back and writing down four things:
- Direction. Better, worse or the same since the last review, and roughly since when.
- The worst stretch. When it was, how long it lasted, what was worst about it.
- What changed alongside. Medication, sleep, activity, stress, illness — as observations, not conclusions.
- The numbers. Average morning stiffness in minutes, typical pain scores, BASDAI by date.
HAVYT’s Doctor Report assembles this from your record for any date range, and shows days with no entry as gaps rather than filling them in. Bring it on your phone or print it; either way, lead with your questions and offer the report as the detail behind them.
Questions people often wish they had asked
- How would you describe my disease activity at the moment, and what are you basing that on?
- What should I watch for that would mean I should contact you before the next review?
- Is there anything in my record you would like me to track differently, or in more detail?
- What is the plan if things get worse, and what would "worse" look like to you?
- Are there exercise or physiotherapy options I should be referred to? (NICE recommends a structured programme with a specialist physiotherapist for axial spondyloarthritis — NICE NG65.)
In the room
Say what you want from the appointment first. Then the direction, then the worst stretch, then the questions. Offer the detail — the report, the diary — rather than reading it out. If something is unclear, ask for it to be written down; if a decision is being made, ask what it is based on. Both patient organisations cited above make the same point: a clinician cannot act on what they do not know, and you are the only source for most of it.