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Lupus

In April, our guest experts in Le Club's Ask the Expert segment were Dr. Mandana Nikpour, MBBS, FRACP, FRCPA, and Julia Kane, RN.

Dr. Mandana Nikpour completed training in rheumatology and clinical immunology in Melbourne, Australia.

Since 2003, she has been the lupus fellow at the Centre for Prognosis Studies in the Rheumatic Diseases, based at the Toronto Western Hospital, in Toronto, Canada.

In this role she is responsible for the care of patients attending the lupus clinic as well as research projects focusing on the frequency of, and risk factors for cardiovascular disease in lupus.

Mandana's other research interests include kidney disease in lupus and novel biomarkers of lupus disease activity.


Julia Kane is a registered nurse who is currently working part time as a management consultant for CorMedical Ltd. She has a post-graduate certificate in family counseling and group therapy management, and specialized in cardiovascular device and diagnostic support for 23 years. She is an accomplished artist, a wife, a mother and a grandmother. She also has lupus.

Julia is currently the vice-president of Lupus Ontario. This provincial organization is part of Lupus Canada's national network.

Julia is the recipient of two Lupus Canada awards and Lupus Ontario's highest award for service - the Donna Chu award. She has been a volunteer on the provincial board of directors for a number of years, and also served as its former president. She is an advocate for lupus public awareness & education, and often speaks to groups and fundraisers.

 

Here are Julia's and Mandana's answers to your questions about Lupus:

Q: How close are we to determining if lupus is inherited? I am a lupus patient and I have two sisters with the disease, and a sister who is just now exhibiting the possible symptoms. I say possible symptoms for we all exhibit this disease in different ways. I have CNS, another sister has heart problems, kidney disease and severe arthritis that resembles rheumatoid, while the second has a lot of inflammation and fatigue, etc. The fact that three of us, and possibly four out of eight sisters with the disease, seems to point to this. What is your opinion? Cecilia

A: There is certainly a genetic component in the development of lupus. For example genetically identical twins are eight times more likely to both have lupus than non-identical twins. While lupus affects 1 person in 1,000 in the general population, first-degree relatives (parents, siblings or children) of an individual with lupus have a 12 percent risk of developing lupus.

While this means that around one in 10 first-degree relatives will also develop lupus, conversely, nine in 10 first degree relatives will not develop lupus.

A number of genes are thought to act in combination to increase the risk of developing lupus. However, not all genetically susceptible persons develop lupus, indicating that one or more as yet unidentified 'environmental triggers' also play an important role in the development of lupus.

 


 

Q: I have been struggling with fertility issues. Through this, investigation it was learned that I am ANA positive. My doctor said this is found in many people who are prone to develop lupus. Can you tell me more about the connection between ANA and lupus, and what the early signs of lupus are?

A: Although almost all patients with lupus have a positive ANA test, a moderately positive ANA test may also be found in 10 - 20 percent of otherwise healthy people. This means that the ANA test is not very specific for lupus. The diagnosis of lupus is based on a combination of clinical features and laboratory tests. Lupus in and of itself is not a cause of infertility. However, some patients with lupus have anti-phospholipid antibodies that may be associated with recurrent pregnancy miscarriage.

 


Q: I have lupus. However some doctors are skeptical about it. One test will show that my ANA is positive for it, and my DNA is not. Then another test will be done and the DNA is positive and the ANA is negative. What is the proper answer - do I have it or don't I?

A: The ANA test is not very specific for lupus and may also be found in 10 - 20 percent of otherwise healthy people. The anti-dsDNA antibody test is much more specific for lupus. However, 30 percent of patients with lupus never have a positive anti-dsDNA test.

The accuracy of the anti-dsDNA test depends on the technique used, with the Farr assay being the most accurate. In patients that do have a positive anti-dsDNA test at diagnosis, the level of antibody varies over time and the test may become negative when the disease is not particularly active.

Overall, the diagnosis of lupus is based on a combination of clinical features and laboratory tests. Laboratory tests alone do not determine whether or not an individual has lupus.

 


Q: Are there any adverse effects or precautions one should know about before increasing soy products in one's diet? Phytoestrogens and lupus, etc.?

A: To my knowledge there have been no published studies to date on the effects of phytoestrogens in patients with lupus. Estrogens used to treat menopausal symptoms are not associated with an increased risk of severe lupus flares.

 


Q: I am a 57-year-old woman who has had many vague symptoms for years, and last year was diagnosed with anti-phospholipid syndrome. Does this disease evolve into lupus, or is it a completely separate condition?

A: Anti-phospholipid antibody syndrome (APS) is associated with blood clots, recurrent pregnancy miscarriages and anti-phospholipid antibodies - although not all patients manifest all three features. APS may occur alone ('primary APS') or in association with lupus. Although 30 - 40 percent patients with lupus have anti-phospholipid antibodies on laboratory testing, of these patients only 50 - 70 percent have blood clots and/or recurrent miscarriages.


Q: Do you know if the drug Restasis .05 percent ophthalmologic emulsion is available for dry eyes with lupus in Canada?

A: No, Restasis ophthalmic emulsion is not currently available in Canada.

 


Q: What is the role of diet in individuals with lupus? What nutrients are important?

A: To date, no foods have been shown to increase or decrease the risk of lupus flares. Patients with lupus should have a healthy balanced diet, including an adequate intake of calcium, as lupus is associated with an increased risk of osteoporosis due to the disease itself and/or its treatment.

 



Q: Can any of you tell me if there is anything NEW that a lupus patient can do to prevent a flare up? I can't get anything positive out of my doctor, other than getting me to try another new drug.

Over the last 15 years, I have been on prednisone, cyclophosphamide, chloroquine, Cellcept, Imuran to mention a few. These are all very powerful drugs as you all know, and their side effects are starting to show (I have had recent hip replacement).

Is there anything we can do or anything out there that can treat the disease, not just mask it temporarily?

A: Lupus is characterized by periods of increased disease activity or 'flares.' Little is known about the triggers for lupus flares. In some individuals, sunlight - specifically the ultraviolet component - may cause a flare of lupus skin rashes and sometimes other clinical features.

In terms of medications, treatment with antimalarials (chloroquine or hydroxychloroquine) has been shown to reduce the risk of lupus flares. However, little is known about the role of other lupus medications such as Imuran and Cellcept in reducing risk of lupus flares long term; currently these medications are used mainly to treat lupus flares rather than to prevent them.

Unfortunately, at present there are no curative treatments for lupus.

 


Q: Is there any connection or relation between lupus and celiac disease?

A: There are reports of the coexistence of lupus and celiac disease in the same patient, although there are no estimates of the percentage of patients with SLE that also have celiac disease.

Celiac disease is an autoimmune disease in which the lining of the small intestine is abnormal due to an immune system reaction against gluten, a protein contained in wheat, rye, barley and a variety of prepared foods. In general, patients with SLE and their family members have a higher frequency of other autoimmune diseases, such as autoimmune thyroid disease, than the general population does.


Q: Is it possible to have lupus but not ever have a positive test? I have had numerous doctors who are suspicious that this is what I have, but each time my test results come back negative for it. I have an aunt who passed away with it, and my sister has lupus as well. We were all diagnosed with fibromyalgia as well.

A: The diagnosis of lupus is based on a combination of clinical features and laboratory tests. Laboratory tests alone do not determine whether or not an individual has lupus. In fact, 30 percent of patients with lupus never have a positive anti-dsDNA antibody test. Conversely, in some individuals, anti-dsDNA antibodies may be present for years before the development of the clinical features of lupus. However, it is unusual for patients with lupus to have no autoantibodies at all. For example, some patients with negative anti-dsDNA antibody may have other autoantibodies such as anti-Ro or anti-Sm. The constellation of clinical and laboratory features of lupus often evolve over time and early on, patients may be diagnosed as having 'incipient' or 'evolving' lupus. In general, it is a good idea to have the diagnosis of lupus confirmed by a rheumatologist.

 


Q: Are patients with lupus at increased risk of coronary heart disease, and if so, what can be done to reduce this risk?

A: Patients with lupus are at increased risk of developing premature coronary heart disease. In fact, young women with lupus are over 50 times more likely to have symptoms of coronary heart disease than healthy counterparts. While the disease itself is the biggest risk factor for coronary heart disease in lupus, conventional cardiovascular risk factors such as smoking, high blood pressure and high cholesterol also play a role.

To reduce the risk of coronary heart disease, patients with lupus should avoid smoking and receive treatment for high blood pressure or high cholesterol, if needed. It is also important to maintain a healthy body weight by eating well and exercising regularly.

 


Lupus is an autoimmune disorder that mostly affects women between the ages of 20 to 40 years. However, 20 percent of patients have a disease onset in childhood and overall 10 percent of patients are men.

Lupus is characterized by flares of disease activity of unpredictable duration. Lupus can affect any organ system including the skin, joints, kidneys and brain. Its wide variety of symptoms can range from mild to severe and may mimic other diseases. Lupus may affect as many as 1 in 1,000 people.

For more information on Lupus and the organizations that advocate for people with Lupus and their families and the researchers who seek answers, please visit www.lupusontario.org and www.lupuscanada.org.

 

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