What should I ask at my lupus appointment?

Lupus can affect different parts of the body at different times, which can make it hard to give a full picture in one appointment. It can help to keep short notes between visits: tiredness, joint pain, skin changes, and anything new, with rough dates. If sunlight, stress or illness seem to make things worse for you, that is worth noting too. Two or three questions, most important first, and a clear idea of what happens next, are a good place to start.

Worth noting down

  • Tiredness, and how it affects your day.
  • Joint or muscle pain, and where.
  • Rashes or skin changes, including after time in the sun. Photos can help.
  • Mouth ulcers, hair loss, or changes in your fingers in the cold.
  • Anything new since last time, even if it seems unrelated.

Questions you could ask

  • Which tests do I need, how often, and how will I hear the results?
  • What should I look out for, and who do I contact if it happens?
  • Do any of my medicines need regular checks?
  • Is there a nurse or advice line I can contact?
  • Where can I read more that you trust?

If things change quickly

  • If you have chest pain, difficulty breathing, or feel very unwell, you do not need to wait for your appointment. Contact your GP or NHS 111 the same day, or call 999 in an emergency.

My lupus appointment

  • Tiredness, and what it affects
  • Joint or muscle pain, and where
  • Skin changes, with photos
  • Anything new since last time
  • Everything I take, including supplements
  • My top question, first
  • Who to contact between appointments
Make my one-page summary

The summary takes a couple of minutes, needs no account, and nothing is saved.

About the condition itself

Written by Mark Dunbavan, founder of Noori. Last reviewed 8 October 2026.

Noori keeps a record of your symptoms between appointments, so this summary can fill itself in, and can introduce you to a UK-registered nutritionist who works with people with joint pain. About NooriSee who is taking clients