The key is to sit down quietly a day or two before the consultation to think about the questions you have and write down the essential points, after pruning the original list once or even twice. Writing these notes one hour before the visit is not effective and should be avoided. For help with this, you can use the Lupus Progress Diary.

Make good use if required of the clinic nurse, especially if they are a lupus specialist nurse. Nurses can often empathise more with the patient, can be easier to talk with and may carry back a point to the doctor that was overlooked or where the nurse senses that the whole story has not been set down. Equally, the practice nurse at your local surgery should also be asked for help or advice – but be selective as to how often approaches are made!

Detailed information is provided elsewhere within the LUPUS UK website on the range of medications available to the lupus patient. For most, continuing medication is a must in order to maintain some semblance of reasonable health, yet there is often a price to pay.