What is Lupus? Lupus is a chronic disease with a variety of symptoms caused by inflammation in one or more parts of the body. It is estimated that it affects over 1:1000 Canadians.
Lupus is not contagious and is not related to AIDS or cancer. It belongs in the family of diseases that includes rheumatoid arthritis, multiple sclerosis, juvenile diabetes, and scleroderma.
The most common type of lupus is SLE (systemic lupus erythematosus). It is a complex and baffling condition that can target any tissue or organ of the body, including skin, muscles, joints, blood and blood vessels, lungs, heart, kidneys, and the brain.
There are other types of lupus which mainly affect the skin. A few individuals develop drug-induced lupus as a response to some medications used to treat other conditions. These symptoms disappear when the person stops taking the medication.
Who gets lupus? Anyone can: women, men, children. Between the ages 15 and 45, eight times more women than men get lupus. In those under 15 and over 45, both sexes are affected equally.
What causes lupus? No one knows for sure. What we do know is that, in lupus, the immune system (the body’s defense against viruses and bacteria) is unable to tell the difference between intruders and the body’s own tissues. Trying to do its job, it attacks parts of the body, causing inflammation and creating the symptoms of lupus.
Because it occurs most often in women of childbearing age, it seems evident that there is a link between lupus and some hormones, but how this works remains uncertain. It also appears that inherited factors may make certain people more likely to develop lupus, but these also are not clear yet.
Until science fully understands how the immune system works, the specific cause of lupus remains unknown.
What are the symptoms of lupus? General statements about symptoms of lupus can be helpful, but each person’s experience will be very different.
Some people will have only a few of the many possible symptoms. Because it can target any of the body’s tissues, lupus is often hard to pin down or diagnose. That’s why it is called “the disease with 1000 faces”.
Before symptoms specific to lupus occur, flu-like symptoms may appear, along with severe fatigue, a sudden unexplained loss or gain in weight, headaches, hair loss, hives, high blood pressure, or changes in the colour of fingers in the cold.
Any of the following may indicate to a doctor that lupus is present. A person with lupus may experience:
Joint pain, sometimes with swelling, redness and heat
A red rash across upper cheeks and bridge of the nose
An unusual reaction to sunlight
A red scaly rash
Small, usually painless sores inside the nose or mouth
Chest pain, worse when lying down or inhaling
Swelling of feet and legs, weight gain
Seizures or severe psychological symptoms
Abnormalities in blood chemistry which show up in blood tests
This is far from a complete list of symptoms, and the diagnosis of lupus must be made by a doctor. Living with lupus: what to expect A chronic illness, lupus is different for each individual, but it often appears in cycles, which can consist of:
a ‘flare’, with severe acute symptoms needing medical attention;
a ‘chronic’ phase, when symptoms may continue but are less severe;
a ‘remission’, when symptoms may disappear completely for long periods, but can return.
In the chronic phase, and especially in the remission phase (when it is easy to forget to take care), a person with lupus needs to avoid situations that can bring on a flare. These include getting too tired, intense stress, poor diet or other factors noticed by patient or doctor.
Lupus is a serious condition, but diagnosis and treatment are improving. Today it can be treated and controlled. More and more people with lupus are finding that they can be active and productive.
What about treatment for lupus? While there is no cure yet, with treatment most people with lupus can look forward to a normal life expectancy. The treatment plan will depend in part on the type and severity of symptoms.
There are many medications that can control symptoms, from a mild anti-inflammatory to some very potent steroids. Generally, a doctor will prescribe the least powerful one, over the shortest time, that can do the job. Medications may have side effects, and, in combination, some drugs can interact to produce unexpected reactions. Both doctor and patient need to be aware of these possibilities, and watch for them.
Living with lupus: what helps? One thing that makes a huge difference in living with lupus is the person’s role in controlling the disease. We can deal better with the challenge of living with this or any chronic condition by learning all we can about the condition and by being aware of how our own body reacts.
Often, a person’s flares follow a clear pattern, with the same combination of symptoms every time. An informed patient can watch for warning signs and alert the doctor early on. While false alarms happen, catching a flare in its early stages can make treatment easier and more effective.
With this as a basis, a good working relationship with the doctor is crucial for the success of treatment.
The strong support of family and friends can be equally important. Membership in lupus organizations can also help meet the challenge.
What is happening in research? Many doctors and scientists are investigating the cause and cure of lupus. At medical centres worldwide (including Canada), research has led to improved tests and techniques for diagnosis and better methods for predicting flares. These allow doctors to start treatment sooner, which improves chances for success.
As part of research, many centres collect and store patient information and statistics. The results of this data can help doctors and patients make better decisions about treatment of an increasingly wide range of symptoms. This, along with today’s advances in technology, the greater awareness about lupus, and the promise of a cure, gives hope to all whose lives are touched by lupus.
Should lupus patients get the flu shot?
The flu shot is strongly recommended for all lupus patients: For most generally healthy people, catching the flu would be just like having a very bad cold. However, high-risk, vulnerable individuals may develop very severe disease with life-threatening pneumonia or other complications, with poor outcomes. Due to a combination of the disease, and for some patients, their medications, people with lupus may fall into this category of vulnerable, high risk individuals, so have a greater need for protection through vaccination.
One caveat: The common flu shot is safe for all people with lupus. There is a version that is administered intranasally, not usually available or used in Canada, that is a Live, Attenuated Influenza Vaccine (LAIV). This version is contraindicated in people who are immunecompromised, which would include many people taking medications for lupus. This especially includes the biological medications such as belimumab, rituximab, abatacept.
Christine A. Peschken MD MSc FRCPC Associate Professor of Medicine and Community Health Sciences College of Medicine, Faculty of Health Sciences University of Manitoba Director, Rheumatology Day Hospital Chair, Canadian Network for Improved Outcomes in Systemic
Further information To learn more about lupus, symptoms, diagnosis, treatment, management, and coping with this chronic disease, contact Lupus Canada by email at firstname.lastname@example.org or by calling 1-800-661-1468.