Lupus Q&A: Ask the Experts
All your lupus questions, answered. To view the answers for each of the questions, click on the question to open and close the tab.
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.
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
- Extreme fatigue
- 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.
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.
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.
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.
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.
Systemic lupus erythematosus (SLE), or lupus, is a chronic inflammatory disease which can affect the skin, joints, muscles, serous membranes, blood cells and different organs of the body. The underlying abnormality of SLE is a dysfunction of the immune system, which becomes over-activated and attacks the body’s own cells rather than foreign agents (such as viruses and bacteria). Although the precise cause of SLE remains unknown despite much ongoing research, many different factors have been implicated. Genetic, or inherited factors are among the contributors to the onset of SLE. Although SLE and other autoimmune diseases (such as problems of the thyroid gland and autoimmune anemia) can run in families, the chance of passing SLE from parent to child is lower than 5 %. Usually the siblings (excluding identical twins) of an SLE patient are not affected. However, for an identical twin, the risk of getting SLE is greater.
The relatively low risk of SLE being passed down through families of SLE patients can be explained by the fact that many different genes are involved : each gene contributes individually to the risk of developing SLE, but each is not enough on its own to induce the disease. In other words, if you have SLE, it is unlikely that your child will develop it. If your child has SLE but you do not, you should not blame yourself, and it is unlikely that a sibling will develop the disease. The genetics of SLE is an area of intense research, and much more information will undoubtedly be gained in the near future.
Dr. Tamara Grodzicky
Hopital Notre-Dame and University of Montreal
Are environmental factors related to lupus, and what environmental factors should I be aware of now that I have lupus?
The most important proven environmental trigger of SLE is ultraviolet (UV) light, such as direct sunlight and the light used in tanning salons. Ultraviolet light can induce chemical changes within skin cells that may activate the immune system. Although it is unclear whether exposure to UV light is sufficient to actually cause SLE, it is known that the onset of the disease after excessive sun exposure is not uncommon, and that flares of SLE often occur in certain patients after exposure to sunlight. It is therefore recommended that patients with SLE avoid exposure to UV light as much as possible : remaining indoors between 10 AM and 4 PM when UV light is at its maximum; wearing long sleeves and pants, as well as hats with wide brims; frequent application of sunblock with a sun ptotection factor (SPF) of 15 or higher.
Other factors implicated in the triggering of SLE (first episode or relapse) are the following :
- Pregnancy or therapeutic abortions (risk present up to 3 to 6 months post-partum)
- Oral contraceptives containing high dose estrogens (low dose estrogen or progeterone containing compounds are usually not contrindicated in inactive, mild SLE; their use should nevertheless be be discussed with the patient’s physician)
- Surgery (which may be related to the release of certain substances into the bloodstream)
- Certain infections
- Certain antibiotics (sulfonamides and penicillin)
- Stress (implicated mostly in mild disease)
At present, there is no scientific evidence that diet (for example : meat or aspartame), silicone breast implants, hair dye, pollution or other environmental toxins cause SLE.
Dr. Tamara Grodzicky
Hopital Notre-Dame and University of Montreal
What exactly is stress? Stress occurs in response to circumstances that require us to adjust or adapt. Research has shown that the degree or intensity of stress that we experience in response to a situation depends on how we evaluate or interpret the threat or challenge from the stressor and the resources we believe we have to cope with the situation. The more we doubt our ability to cope with a situation, the more stress we feel. Living with a chronic illness such as lupus can certainly be stressful. The level of stress experienced in relation to living with lupus will depend on how demanding or challenging we feel the illness is and how we perceive it impacts several areas in our lives (i.e. work, family, leisure activities). This of course can vary over time depending on how active the illness is and on other factors which can alter our response to stressful situations (i.e. level of social support).
Is all stress bad for you? No. Stress is a normal part of everyday life. In fact life would probably be quite dull if we had no stress. Stress only becomes a problem when it interferes with our ability to perform daily tasks, negatively impacts our healthy (i.e. chronic muscle tension, stomach upsets) or leads us to engage in unhealthy behaviours in an attempt to temporarily reduce stress (i.e. smoking, drinking alcohol excessively, poor eating habits).
What factors can modify our response to stressful situation? Some factors can actually reduce or increase our response to stressors. These include:
- Perception of Control. The more control we feel we have over the stressful situation, the less stress we will feel in relation to the situation.
- Social Support refers to our perceptions of the degree of comfort, caring or help we receive from others in our social network. The more we feel we have others in our network that we can rely on in times of need, the less stress we feel in response to stressful situations. In fact studies have shown that lupus patients who report higher levels of social support also repost better physical and mental health status.
- Coping style. Coping refers to the strategies we use to manage stress. This can include problem-focused strategies which are active behaviours aimed at tackling the problem such as finding out more about your illness, engaging in self care behaviours (i.e. exercise). Problem-focused coping strategies work best in response to situations which are under your control (i.e. meeting a deadline). Emotional focused coping refers to behavioural or cognitive strategies aimed at reducing the emotional reactions (i.e. sadness, anxiety) caused by a stressor, such as talking to a friend about how you are feeling. Emotional focused coping strategies work best in response to situations that are not under your control such as dealing with a lupus flare-up. Overall, studies have sown that people who use multiple strategies cope better with stress.
What are some mind-body interventions that can help reduce stress?
- Awareness. Become aware of how you react physically (i.e. racing heart, indigestion, tight neck and shoulders), behaviourally (i.e. eating poorly, crying) and emotionally (i.e. easily upset, losing your temper) when stressed. Awareness is an important first step to better managing stress as it allows you to catch yourself earlier rather then allowing the stress to become prolonged.
- Change your self-talk. Learn to reframe the situation in a more positive light. Focus on aspects that are under your control and don’t waste energy trying to modify what can not be changed!
- Keep a journal. Writing for about fifteen minutes daily can help you better understand and work through your feelings and find solutions related stressors.
- Stay connected. Be sure to ask for help when you need it. Stay connected with friends and family, avoid the urge to retreat. Talking to someone about how you feel can help you see things more clearly and helps to release negative feelings.
- Learn a relaxation technique. There are many forms available (i.e. meditation, progressive muscle relaxation).Explore different ones and see which feels right for you. Remember that to experience the benefits of these techniques it takes daily practice. So schedule in some time and give them a chance!
Deborah Da Costa, PhD
Department of Medicine
With arthritis it is really hard to exercise, but I know it is important to keep active. What can I do to keep active?
The first step that must be taken when starting an exercise routine is determining the type of arthritis that is present. People may have both osteoarthritis and rheumatoid arthritis, or they may experience only one at a time. In both cases, exercise is thought to be an excellent way to treat the pain and the loss in range of motion.
Osteoarthritis is usually the result of wear and tear, while rheumatoid arthritis is caused by a malfunction in the body that causes it to attack itself. According to Fischman and Hobson (2005) there are nine ways to help fight both types of arthritis with exercise being number four on the list. The number three on the list also involves strength and balance that can be achieved through training.
High impact exercises like those that involve jumping or hitting the ground at high intensities are not recommended because they may cause more joint damage. Walking, cycling, an elliptical trainer are all cardiovascular exercises that have generally very low impact and are considered to be safe in the presence of arthritis. Exercise in the water such as water aerobics are considered to be good but only in the case of severely advanced arthritis because this type of exercise does not have the impact necessary to help build up the bones and joints in the body.
Weight training is also a very good way to regain some of the range of motion in the joints due to the repetitive movements in the area that is being trained. This will also strengthen the muscles around the joint, help increase balance, and help build up the bones for prevention of osteoporosis. With every weight training program, there should be stretches that follow in order to increase flexibility. It is very important that a qualified individual makes the training program in order for it to be efficient.
Exercise in itself helps balance out the immune system, helps blood circulate better in the body, prevents heart disease and of course, something we all want, it burns calories. To make any training program worthwhile, a balanced diet must be adopted and above all, the doctors orders must be followed.
Miriam Gaudelli, B.Sc.
ANIE certified Personal trainer, ANIE certified spinning instructor
and CSEP certified fitness evaluator
Fatigue is the most commonly reported symptom in patients with lupus. It can be physical:”I’m too tired to stand up” and/or mental:”I can’t concentrate today”, “I keep re-reading this paragraph again and again”.
While the exact cause of lupus fatigue is unknown, physiological and psychological factors involved. Depression, stress, poor sleep and lack of physical activity can worsen fatigue. Here are some psychosocial strategies that can help:
- Learn a stress-reduction technique (i.e. relaxation, meditation). There are great self-help workbooks and audiotapes to learn stress-reduction strategies.
- Establish better sleep patterns.
- Keep a diary of your fatigue patterns – identify and CHANGE stressors, thoughts and behaviours that may be increasing your fatigue. My patients have found this technique most helpful for better understanding when in the day they get most tired and in planning activities around times when their energy level is higher.
- Get some exercise. Consult with your physician and start gradually. Exercising regularly is important for muscle strength, endurance and improves fitness which in turn will give you more energy.
Deborah Da Costa, Ph.D.
Department of Medicine
Division of Clinical Epidemiology
Montreal General Hospital
McGill University Health Centre
Work on Your Thinking.
This is one of the most effective strategies for coping with negative feelings such as frustration, depression or anxiety that often results when one is living with a chronic unpredictable illness like lupus.
Remember, you feel the way you think:
Avoid thinking in all or nothing ways – I’ll never be able to enjoy the things I like to do again. Counteract this thought with a more positive one. I can still enjoy a lot of things I like, and can I discover new things to do and enjoy.
Avoid jumping to conclusions. I feel tired today, I must be getting another flare-up Counteract this thought with a more likely cause. I feel tired today, I should listen to my body and take it easy today.
Avoid thinking about worse case scenarios. If things don’t start improving fast I will get fired. Counteract this thought with a more realistic assessment. I have only taken one day off this month and my boss understands my situation. My other co-workers also get sick and nobody here has ever been fired for taking sick days when they were ill.
Learn to say “NO”
You don’t have to do something if you don’t have the desire, energy or time! This is by far many of my patients’ favorite homework assignment that I give them. Initially my patients are a little ambivalent about whether saying “NO” can even be an option and often worry about how others will react. With some practice, patients report that saying “NO” is actually much easier than they had expected and people are typically very understanding.
Deborah Da Costa, Ph.D.
Department of Medicine
Division of Clinical Epidemiology
Montreal General Hospital
McGill University Health Centre
Naturopathy’s strength lies in treating the individual, not just the disease or symptoms. As a Lupus patient is different than the other patients, the best approach-when looking into natural remedies-is to get a professional opinion.
However, generally speaking, there are a few lifestyle changes a Lupus patient should pay more attention in order to balance out one’s immune system:
- Good, restful sleep(the immune system regenerates during sleep)
- Good nutrition, more specifically absorption (in order to heal, and have energy,) The basis of good nutrition starts in the mouth with the way one eats and more particularly the way one chews.
- The reason for all digestive processes is to get the food broken down into the smallest particles which will be absorbed later across the intestinal membrane into the blood stream. All of this can be eased off by increasing the number of chewing movements at each bite. The well researched “golden rule” is: if your food feels like “baby food”(which happens after about 35 chews), go ahead and swallow.
Adequate relaxation and stress control. Meditation is one of the best tools a lupus patient can learn for managing the disease.
In good health,
Dr. Anca Martalog,
Doctor of Naturopathic Medicine
Richmond Hill, Ontario.
One of the major concerns for people faced with a chronic/episodic illness is managing cash flow. Knowing that there will be periods of not working, and/or periods of declining health, means that serious planning in advance is required. Much of this advice also applies to Canadians not currently dealing with a disability.
- Plan ahead for cash flow. This is not so much budgeting – more a question of knowing where the money is going and figuring out what expenses can be cut if or when the need arises. For example, reduce transportation costs if you live in a city by eliminating car costs where possible. Reducing phone or cable costs; eating out less and reducing entertainment and the recreation budget can help enormously.
- Know what income you could expect to have – is the nature of your disability one which will permit part time work but not full-time? Do you have a spouse who works – or who could work – and generate income? Are parents/children/ siblings able to assist you financially?
- Know where you could get extra income – do you have a spare room you could rent out to a student for example? Are your grown children living with you while working? Are you charging them a reasonable rent? Can it be increased?
- Whether a progressive or intermittent illness is the cause of your disability, get debt paid down as rapidly as possible while you are healthy. Avoid credit card debt. Renegotiate your mortgage to a longer amortization period and arrange to pay the minimum each month. Then, increase payments or make lump sum payments as allowed by your mortgage agreement once a year, or double up monthly payments if this is an option, when and as you can. In this way you leave yourself maximum flexibility in your cash flow and don’t have to approach the mortgage lender to renegotiate your mortgage from a position of weakness.
- Manage debt sensibly – if you own your own home and have a reasonable amount of equity in it, negotiate a home equity line of credit for at least one year’s living expenses only to be used for periods of disability if there is little or no other income.
- Make sure you understand how Employment Insurance (EI) sickness benefits work if you work for an employer, and make sure you understand any group short term sickness and Long Term Disability benefits. If you are self-employed, the need for an emergency fund is much greater – no short term EI or group benefits for you!
- If you have an individual disability insurance plan, make sure you understand all the benefits and ramifications. If in doubt, talk to your insurance agent.
- If you have savings outside an RRSP, these funds can be accessed to provide income while you are not working. Of course you already have an emergency fund of 3-6 months living expenses, don’t you?! Replenish savings when you are working again.
- If you will have a year of no taxable income (that is, you have no income from EI, CPP disability, and any disability insurance is non-taxable), then it is worth considering dipping into your RRSP. RRSP’s are taxable when withdrawn either in a lump sum or as an income stream at retirement. But if you have no or very little other income in a year, the basic personal exemption is $8,148 in 2005 which means that you can withdraw this amount from the RRSP and pay no tax. The financial institution will withhold tax (if you take the money out in amounts of $5,000 or less, the with-holding rate is 10%) but you will get it back when you file your tax return. Even if you have a spouse who could claim a spousal amount for you, the benefit is only about $1200.
- Check to see if you qualify for the Disability Tax Credit – this is an additional tax exemption but in order to qualify, much depends on your inability to perform the activities of daily living. This deduction will allow you to withdraw an additional $6,500 from the RRSP tax free.
Everybody’s financial situation will vary and these strategies are not suitable for everyone.
Janet Freedman CFP, R.F.P.
Janet Freedman is a fee-only financial planner and President of Finance Matters in Toronto. She is also co-author of Hit by an Iceberg: Coping with Disability in Mid-Career, December 2003 by Trafford. Find out more at www.hitbyaniceberg.ca. You can email Janet at firstname.lastname@example.org
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