Coping with Lupus

Learning to live with lupus is like anything else in life; like becoming a parent, starting a new job, making an investment or buying a car. One has to learn how to do it and this learning does not happen overnight. Life is made up of pleasures and of obligations. Clearly, lupus can be quite an obligation but, depending on the person, the burden of this obligation may be lighter or heavier.

One key to coping with the illness is to get organized. Managing the day to day aspects of your lupus will help you to be in better control. Below I have listed some practical tips that will help you take care of your lupus responsibilities.

1.See your doctor regularly and do not postpone your visit because you "feel so well". Make a list of all your questions and bring it to your next appointment.

2.Make a list of all your pills or medications to each appointment. This helps your doctor identify "that little yellow pill" that was prescribed by "that other physician". Knowing all your medications, your doctor may be able to cut down on the number you are taking, which is nice and saves money too.

3.Buy a multi-compartment pill box in any pharmacy so that you can lay out your pills for each day or week. This makes it easy to check if you have forgotten to take your medications.

4.If your doctor orders a urine collection over 24 hours, collect your urine from Sunday to Monday morning and bring it into the hospital on your way to work. Carrying around a jug of urine may be embarassing but do your best not to lose a drop. Important decisions about the management of your disease will be made, in part, based on the results of this collection. (Urine collection should not be done during menstruation.)

5.If your blood pressure is checked by your family doctor, the nurse at work or by yourself, don't forget to bring these readings to your next appointment. (Readings done at the Lupus Clinic are often higher and this can cause unnecessary concern.)

6.Purchase a thermometer. If you feel that you are running a fever, take your temperature every six hours and wrrite down the results. If the problem continues and is not explained by a cold or the flu, call your physician.

7.Be prepared for blood tests to be taken regularly, even when everything seems fine. SLE is unpredictable and the sooner a flare is detected, the better.

Lab Tests for Lupus

Because many symptoms of systemic lupus erythematosus (SLE) mimic those of other illnesses, lupus can be a difficult disease to diagnose. Diagnosis is usually made by a careful review of three factors:

1. the individual's entire medical history;
2. the individual's current symptoms; and
3. an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status.

To make a diagnosis of SLE, an individual must show clinical evidence of a multi-system disease (i.e. has shown abnormalities in several different organ systems). The following are typical symptoms or signs that might lead to suspicion of SLE:


1. Skin: Butterfly rash across the cheeks; ulcers in the mouth; hair loss.
2. Joints: Pain; redness, swelling.
3. Kidney: Abnormal urinalysis suggesting kidney disease.
4. Lining membranes: Pleurisy (inflammation of the lining of the lung); pericarditis (inflammation of the heart lining); and/or peritonitis (inflammation around the abdomen). Taken together, these types of inflammation are known as polyserositis.
5. Blood: Hemolytic anemia (the red cells are destroyed by autoantibodies); leukopenia (low white blood cell count); thrombocytopenia (low number of platelets).
Lungs: Infiltrates (shadowy areas seen on a chest x-ray) that come and go
6. Nervous system: Convulsions (seizures); psychosis; nerve abnormalities that cause strange sensations or alter muscular control or strength.

If an individual has several of these symptoms, the physician will then usually order a series of tests to examine the functioning of the individual's immune system. In general, physicians look for evidence of autoantibodies. Although there is no one test that can definitely say whether or not a person has lupus, there are many laboratory tests which aid the physician in making a lupus diagnosis.

First, there are routine clinical tests which suggest that the person has an active systemic disease. These include the sedimentation rate (ESR) and CRP which are frequently elevated in inflammation from any cause. Serum protein electrophoresis may reveal increased gammaglobulin and decreased albumin, and routine blood counts may reveal anemia and low platelet and white cell counts. Finally, routine chemistry panels may reveal kidney involvement by increases in serum blood urea nitrogen and creatinine, abnormalities of liver function tests, and increased muscle enzymes (such as CPK) if muscle involvement is present. These kinds of abnormalities alert the doctor to the presence of a systemic disease with multiple organ involvement.

Commonly used blood tests in the diagnosis of SLE are:

1. The anti-nuclear antibody test (ANA) to determine if autoantibodies to cell nuclei are present in the blood
2. The anti-DNA antibody test to determine if there are antibodies to the genetic material in the cell
3. The anti-Sm antibody test to determine if there are antibodies to Sm, which is a ribonucleoprotein found in the cell nucleus
4.Tests to examine the total level of serum (blood) complement (a group of proteins which can be consumed in immune reactions), and specific levels of complement proteins C3 and C4

In coming posts I will be goin through these Blood tests individualy..