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From the National Magazine

Your first visit to a Lupus clinic

Angela R W Barwick RGN JP
Sister/Lupus Specialist Nurse,
Louise Coote Lupus Clinic,
St Thomas Hospital, London

When visiting a Lupus Clinic for the first time the patient should be made welcome and reassured. The hospital staff do understand their condition and some of the anxieties they may have had.

Patients may have lived with lupus for many years with the condition unrecognised. Therefore they can feel somewhat vulnerable and defensive. They may have been back and forth to various doctors with different symptoms and they sometimes feel that their doctors think they are malingering. However when they come to the Lupus Clinic we try to allay such fears, and they will be listened to sympathetically. Very often patients have clearly read up about lupus, in papers, magazines, via LUPUS UK or on the Internet, and thus are fairly knowledgeable about their condition.

When patients initially arrive in clinic they are taken to the waiting area where:

  • Firstly they are weighed, for weight can fluctuate dramatically due to steroid therapy, water retention and in some cases lack of mobility.
  • They are then asked to provide a specimen of urine. Blood or protein in the urine can indicate renal involvement, and glucose in the urine may be steroid induced or due to primary diabetes. Mid stream specimens of urine may be sent off for analysis.
  • Blood pressure is usually taken, as raised blood pressure may indicate renal or cardiac problems.

Then the patients will see the Clinic Doctor for consultation. On the first visit patient history will be taken and an examination will be undertaken. They may also have their eyes examined, and very often they have a Shirmers test, when two small strips of blotting type paper are inserted in the eyes to measure tear secretion. Dry eyes are an indication of Sjogrens Syndrome. In addition the patients joints may be examined and their nerve reflexes tested.

In our Clinic a Consultant will always come in and see new patients on their first visit. Subsequently they may be seen by a Registrar or Specialist Nurse. After consultation patients will be asked to have their blood tested for:

  • Full blood count and ESR - to check for anaemia, low platelet count and low white blood cell count. A raised ESR can indicate a degree of inflammation in the body.
  • Renal function tests. Low albumin and high creatinine can indicate renal involvement.
  • Cholesterol and Lipid tests - to check for early heart disease.
  • Liver function tests - to check for drug or liver enzyme toxicity.
  • A raised CRP can also indicate inflammation.
  • Immunology tests. DNA, ANA, ENA are diagnostic for lupus/Sjogrens Syndrome.
  • Anticardiolipin antibodies/Lupus Anticoagulant tests - for indication of antiphospholipid syndrome.

Other tests to mention are 24 hour urine for creatinine clearance and protein, ECG, ECHO (heart tests), ultra abdominal sounds, chest and spinal x-rays, lung function tests, bone density scans. These tests are not generally requested on the first visit unless patients have symptoms that require them.

After the first visit to the Clinic patients will be requested to return for a further appointment within a few weeks. The doctor will explain the results of the initial tests, and where necessary action taken. New medication may be indicated. General information regarding such new medication will be given and any side effects explained. We do ask patients to telephone our hot line should they have any queries regarding the medication, side effects, or any symptoms that may be worrying them. Advice may also be given on sunblock protection, vaccinations, dietary requirements, alternative medicine, general queries and counselling.

Above all we want our patients to have had a positive, reassuring and informative visit to the Clinic, where they will not be afraid to ask questions relating to their condition, and where we hope they feel safe in our hands.

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