Lupus Society of Alberta

Systemic Lupus Erythematosus is an auto-immune disease which affects thousands of Canadians. The extent of damage that lupus can cause varies greatly, as can the symptoms. Treatment is highly individualized and there is no cure.

E D U C A T I O N D A Y S 2006

Christina Seger and Rosemary Church

Education Days, held in Calgary on September 9 and in Edmonton on September 10, were very successful with the presentation of new research results, advice about minimizing risk of heart disease, tips on finding and keeping a family physician, features about new self management and exercise programs, support for caregivers and Range of Motion exercise sessions.

Dr. Mandana Nikpour

Keynote Speaker for both events was Dr. Mandana Nikpour, the rheumatologist from Toronto Western Hospital who was the recipient of the LSA Dr. Ian Watson Award in 2005 and 2006 as well as the LSA 2005 Annual Research Grant. Dr. Nikpour is responsible for the care of lupus patients as well as research projects focusing on the frequency and risk factors for cardiovascular disease in lupus.

Dr. Nikpour works with Dr. Murray Urowitz in Toronto, whose lupus clinic was the first to recognize the association between premature coronary artery disease and lupus.

The Toronto Lupus Clinic team noticed in the 1970s that angina and heart attacks were occurring in young women with lupus. It is now known that premature coronary artery disease is relatively common in women with lupus. The current research shows that women between the ages of 35 and 45 years are more than 50 times more likely to suffer from heart disease than their peers in the general population. 10 per cent of adult women with lupus will have symptoms such as angina (pain in the chest, jaw and/or arm brought on by physical exertion) or heart attack. Another 40 per cent of adult women with lupus have silent coronary artery disease – that is, they have plaque in their arteries but do not experience angina.

The risk for men with lupus has not been proven but Dr. Nikpour suspects that they may be at higher risk than women with lupus, and further postulates that men may be at risk for stroke and vascular disease.

The biggest risk factor for heart disease is the lupus itself. The inflammation caused by lupus is thought to be responsible for damage to the blood vessels. The risk is increased by high blood pressure, diabetes, and high cholesterol. The older a person is at diagnosis of lupus, the higher the risk. The risk may also be increased by the use of prednisone and may be higher in post menopausal women. High doses of prednisone are associated with high blood pressure and high cholesterol.

Prednisone in high doses is important as an initial therapy to bring disease under control, but it should be reduced to 10 mg per day on a long term basis, because higher doses are associated with high blood pressure, high cholesterol and diabetes. Steroid sparing agents such as imuran and cellcept are helpful in treating the disease without escalating the risk of heart disease.

Because all adults with lupus are at increased risk for heart disease, it is important to aim for blood pressure and cholesterol measurements that are similar to that in the treatment of diabetes patients.

People with lupus should aim for blood pressure which is less than 130 over 80 and for LDL cholesterol which is less than 2.5. To date it has not been demonstrated that if you reduce blood pressure and cholesterol, the risk of heart disease can be reduced but Dr. Nikpour feels that it makes intuitive sense. Currently, lupus cannot be eradicated but blood pressure and cholesterol can be treated, so the rheumatologists in Toronto focus on treating the treatable factors.

The person with lupus can take active steps to reduce the risk of heart disease by not smoking, avoiding obesity, and in particular weight gain around the middle, and being physically active. Prednisone causes weight gain, and so it is challenging for the lupus patient to avoid this. Exercising to a level that is comfortable may help with weight control and increase the HDL cholesterol, the good form of cholesterol.

Dr. Nikpour recommends that the treating physician check the blood pressure of lupus patients at each visit and test the cholesterol at least once a year, possibly more frequently, and that blood pressure higher than 130/80 and LDL cholesterol higher than 2.5 be treated. She also encourages lifestyle changes to reduce risk factors such as smoking, weight gain and physical inactivity.

In Calgary, Calgary Health Region Exercise Specialist Laura Crawford described 2 programs presented by the region for people with long-term illnesses. Living Well with a Chronic Condition is a supportive program for people with diabetes, high blood pressure, arthritis, chronic lung disease, asthma and other long-term illnesses such as lupus. The Palliser and Chinook Health Regions have begun similar programs and the Heart Institute which is in planning stages in Edmonton will offer the same kind of program.

The Living Well with a Chronic Illness program includes supervised exercise classes which begin with a one-on-one assessment by a health care professional. Each participant receives an exercise program specifically designed for their health condition.

Classes range from Easy Going, for individuals with significant limitations who need close monitoring, to Get Going for those with some limitations who need some monitoring, to Keep Going for those with few limitations to exercise who need minimal monitoring. All classes are taught and monitored by health care professionals and fitness leaders. There is a fee for the classes but financial assistance is available. These classes are offered at facilities throughout Calgary and in surrounding communities.

We learned that the Calgary Health Region also offers a 6 week Self—Management Workshop called Row Your Own Boat in which people with a variety of chronic illnesses participate together to share ideas and learn skills necessary to love successfully with their chronic conditions. Classes run by trained lay leaders who also have long term illnesses cover subjects such as goal setting and problem solving, coping with pain and fatigue, managing difficult emotions such as frustration and fear, and relaxation techniques and self-talk. There is a fee for this course but again financial assistance is available.

We often receive calls at the LSA office requesting assistance in finding a family physician who is taking new patients. Some of the calls also re-late frustrations that have developed with the individuals current practitioner. At the Calgary event Dr. Jan Hurley provided an up-beat session filled with good information and humor and shared her perspectives as a family physician. Dr. Hurley is also a Clinical Lecturer in the Department of Family Medicine at the University of Calgary, Faculty of Medicine. She commented that 20 years ago their was a view that too many medical professionals were being trained and as a result funding was cut-back and fewer openings were available for students in medicine, nursing, etc. She did reassure us that physicians can be found in a variety of ways: Health Region websites, the College of Physicians & Surgeons of Alberta website [www.cpsa.ab.ca/findaphysician/medical_directory.asp], in emergency room departments and Health Centres, etc. Dr. Hurley also made a very sound recommendation: “make friends with the doctor’s receptionist!”

A common concern is that a patient is expected to raise only one health issue at each visit. This can be quite a challenge if one has lupus. Options include asking for a longer appointment or booking more than one appointment in close sequence. Patients also have responsibilities in building a strong “team relationship” with their doctors. Everyone should maintain a diary that includes medications, allergies, surgeries, health conditions, lab and medical reports if you have them, etc. This is of course only useful if it is current and well maintained. Your Alberta Health Care Card is also an essential part of your “kit” as is any other insurance coverage or disability insurance information.

Yes, it is possible as Dr. Hurley said “to get fired by your doctor.” If that happens her very practical advice was to “live with it and move on.” In the interest of building a good team relationship mutual respect and courtesy can and should be developed. Defensiveness and unpleasantness may be tempting when one is frustrated and sick and tired of being sick and tired, however it is in your best interest to back-off and try again another day.

...physicians can be found in a variety of ways: Health Region websites, the College of Physicians & Surgeons of Alberta website [www.cpsa.ab.ca/findaphysician, in emergency room departments and Health Centres, etc.

We, as lupus patients, also have a critical role in practicing good self-management of our health. Learn as much as possible about your prescriptions (talk to your pharmacist), follow the advice of your physician and understand what triggers your flares and then avoid them. Rosemary Church presented this session in Edmonton.

Also in Edmonton Kimberly Trommelen, a recent graduate from the University of Alberta, B.Sc., Pharmacy, presented Let’s Talk Medications. This was a very thorough talk on the various medications that can be prescribed for the treatment of lupus and the side-effects that can be experienced. Kimberly also responded effectively and with good humor to a wide variety of questions and comments from the audience. A copy of her presentation is available from the LSA office.

The role of caregiver can be significantly demanding in a number of ways. Emotional, physical and financial stresses are often part and parcel of the experience. To address these issues we offered a caregivers session in both programs. In Calgary, Charlene Retzlaff, BFW, RSW, Resource Liaison with the Family Caregiver Centre, Calgary Health Region facilitated a breakout group for caregivers. Brenda Higham, MSA, MACT, Cert. Gerontology, Executive Director of the Alberta Caregivers Association presented in Edmonton. She provided an overview of the services available through that organization and the options available for caregivers.

Both speakers effectively outlined the importance of respite for caregivers and the need for caregivers to be educated in the area of self-care. Time and access to leisure activities and socializing for the purpose of enhancing emotional, spiritual, physical, intellectual and mental well-being are essential.


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