The Lupus Clinic

All patients visiting the Lupus Clinic should have their urine tested for protein, blood and glucose; blood and protein for indication of renal involvement, glucose for drug induced or primary diabetes. They should be weighed as their weight can fluctuate dramatically due to steroid therapy, water retention and in some cases lack of mobility. MSU tests may be requested. Ideally all patients should have their blood taken, though in practice this is usually limited to patients with known renal disease or to new patients.

On arrival their notes are checked for up to date blood test results and for any previous tests requested, i.e. MRI scans, X-rays, nerve conduction tests, Dexa scans etc. Leg ulcers may require redressing whilst in the clinic. Eye checks may need to be carried out before commencing anti-malarial treatment.

Although lupus is rarely a crippling disease the patient may need help in dressing and undressing prior to examination and in toileting. Information booklets should be available for the patients and details of how to contact patient help groups such as LUPUS UK. If patients are to commence new medication or treatments they should be given an information booklet on the drug or treatment to be carried out, and asked if they have any concerns. Above all patients with lupus require a lot of support and understanding in coming to terms with the disease. In some cases they will have gone undiagnosed for several years, and they feel frustrated that no one understands what they are going through. In most cases patients look reasonably well and it can be difficult for friends and relations to comprehend how ill they feel. This is where nurse-led clinics are invaluable, as time is needed for each patient in order to listen to their concerns and fears.

The nurse and the patient can try and work through these difficulties together. Patients feel relieved to talk to someone who understands what they are going through. In a nurse-led clinic the specialist nurse can closely monitor the patient's drug therapy and check through regular blood testing for toxicity or side effects. They can also check the patient's blood pressure, urine and, where indicated, their 24 hour urine results where the kidneys are involved. They can follow up more regularly patients who are going through a flare and report to the doctors any change in their condition. One practice is to teach patients to test their own urine at home for protein.

Telephone help lines are also an essential part of the lupus clinic for patients, GPs and district nurses to ring for advice and information.

General Advice For Patients

1. To learn as much as they can about lupus so that if they develop further symptoms they can recognise them and inform their doctor.
2. To get enough rest and exercise.
3. To eat a well balanced diet.
4. To avoid excess exposure to the sun.
5. To manage their stress levels if possible.
6. To follow doctors' advice and take medication regularly where indicated.

LUPUS UK have published a valuable Guide for GPs. If you are a medical professional and would like a copy of Lupus - A GP Guide to Diagnosis please write or call quoting your professional address and we'll be happy to get a copy to you quite free of charge.