The Arthritis NewsletterSpring 2012
SARDs: What is it and who has it!
When we hear the word “arthritis”, many of us think of osteoarthritis or rheumatoid arthritis. However, there are many other types of arthritis that most of us are not familiar with; one such group is SARDs. As you will appreciate from the following discussion with Dr. Antonio Avina, while these diseases may not receive as much exposure as do rheumatoid arthritis and osteoarthritis, they can have a serious impact on one’s quality of life.
Dr. Avina is a research scientist at the Arthritis Research Centre, and Assistant Professor, Department of Medicine (Rheumatology) at the University of British Columbia.
What is SARDs?
Systemic autoimmune rheumatic diseases, known as SARDs, are chronic autoimmune disorders that result in inflammation and organ damage. They can also lead to further health concerns and, in some cases, even premature death.
SARDs can be divided into 2 subgroups of disease:Connective Tissue diseases:
Subgroup 1: Connective Tissue diseases:
- Systemic Lupus Erythematosus
- Systemic Sclerosis
- Sjogren’s disease
Subgroup 2: Systemic Vasculitis diseases:
- Wegener’s disease
- Giant cell arteritis
- Takayasu’s disease
- Polyarteritis nodosa
Are SARDs common diseases?
No, SARDs are relatively rare disorders. We don’t know exactly how rare, because information on the number of Canadians living with SARDs is scarce.
Our current research found that people with SARDs represent less than 0.5% of the adult population in BC. So, for every 100, 000 adults living in BC, there are 389 cases of connective tissue diseases and 32 cases of systemic vasculitis diseases.
Are women more likely to have SARDs? If so, do hormones play a role?
It’s unclear why, but women seem more susceptible to SARDs in general. For adults, the ratio of women and men with lupus is 9 to 1 respectively.
Some scientists do believe that hormones play a role. Their theories are not unfounded, as research has shown that women and men with lupus process hormones differently than people without lupus. There’s also an imbalance between the two main sex hormones (androgens and estrogens) in people with lupus.
What is clear is that further research is needed on the topic.
What is the current state of research on SARDs? Is this an emerging field?
SARDs share similar characteristics but, despite this, they have typically been investigated as individual disorders. This has meant that researchers have had to rely on smaller sample sizes on which to base their findings, which has limited the impact of their studies.
At the Arthritis Research Centre of Canada, we are now working in collaboration with researchers at McGill University on a study called ‘Burden and Comorbidity of Systemic Autoimmune Rheumatic Diseases’. It is an ongoing study, and the first of its kind to examine SARDs collectively as a group. This approach is enabling our research to be informed by larger sample sizes, which could help findings to have greater impact at the policy level while improving our knowledge on how we treat SARDs.
What are the medical costs of SARDs?
The medical costs of SARDs are not well known, although preliminary evidence suggests that they are more costly than more common diseases such as rheumatoid arthritis and osteoarthritis.
Our ongoing research is estimating the economic burden placed on BC society by the use of health care resources for SARDs.
In doing this, we’ve calculated the number of medical visits made by people living with SARDs, as well as their other outpatient visits, surgical procedures and hospital admissions. People living with SARDs often have to handle a complex regime of medication, and so we’re also assessing the cost of medicating these diseases.
Our preliminary results suggest that overall medical costs for SARDs were approx. $571 million from 1996 to 2007. That’s over a period of 12 years. Hospitalizations made up just over half of these costs, and medication seemed to be the only cost growing steadily throughout this period.
We should also be aware that this cost estimate is likely to be 2 or 3 times greater, once we consider all the extra indirect costs of SARDs, e.g. people needing time away from work, etc.
We predict that, with these estimates, policy makers can better allocate health care resources and new therapies for people living with SARDs.
What are the health risks associated with SARDs?
Some people with SARDs suffer other health-related issues such as cardiovascular disease, osteoporosis, renal failure, cancer and even death. Sometimes these additional health complications develop as part of the disease itself or as a result of the therapies used in treatment.
Our research is examining the potential risk of each outcome by analyzing health data from the BC government. We believe that estimating these risks could help improve the use of preventative interventions and treatments for people living with SARDs.
You also collaborate on a project aimed at supporting people with lupus (a type of SARD). Who does lupus affect primarily?
Lupus primarily affects young women, often of ethnic minorities such as Indigenous or African Canadian. A typical person with lupus is a woman between the ages of 20-40, struggling to affirm her work or career while starting or maintaining a family.
In total, an estimated 17, 000 Canadians (including children) live with lupus, with many more thousands of family members suffering the indirect consequences.
Why is lupus so difficult to diagnose? What can be done to improve the speed of diagnosis?
Lupus and almost all SARDs are difficult to diagnose because it can be hard for doctors to distinguish them from other diseases. Some doctors who are not familiar with SARDs may not even consider them as a possibility.
SARDs are not an important part of the curriculum in medical schools, and so not all doctors have the knowledge to diagnose them promptly. The situation has been improving recently, but there is still a long way to go.
Also, SARDs present themselves in different ways, depending on which organ is involved, and sometimes the onset is gradual and insidious. This means it often takes longer to gather enough evidence to confirm whether a patient has SARDs or not.
Are there resources available for the newly diagnosed?
The Lupus Interactive Navigator (LIN) is a free online tool to ensure that people living with lupus have access to information and support that could help them to better manage their disease in daily life. It could prove useful to the newly diagnosed as well as to people who have been living with the disease over time.
The LIN is being developed by the Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CaNOIS) in collaboration with the Arthritis Research Centre of Canada, programmers at Jack Digital Production Inc., and Ms. Louise Bergeron, a consumer living with lupus.
Where can I find the LIN?
Before the LIN becomes available for public use, it is being tested in five centres across Canada (Vancouver, Edmonton, Winnipeg, London and Halifax).
As a person living with lupus, I sometimes have trouble staying on track with my treatments and medications. How can the LIN help me?
People with lupus take, on average, 5-8 medications per day with doses that may vary from one doctor’s visit to the next. Regardless of the best efforts of the doctor to explain this regimen, it can become difficult for the patient to manage their medication treatment.
Despite the risk for error or confusion, there have been limited efforts to effectively summarize information about medications and treatments for the benefit of lupus patients.
The LIN could help by sending summaries of recommendations guided by recent evidence, as well as reminders, which may enable people with lupus to feel more in control, less anxious and more comfortable in making decisions about their treatment.
Should I get pregnant if I have lupus?
Yes, as long as the disease is “quiet” or inactive.
Research has shown that pregnancy could make lupus flare. We also know that women with lupus have more pregnancy complications than the general population. Having said this, if the disease is under control for at least six months the chances of having a successful delivery are very high. In other words, planning when to become pregnant is an important issue to discuss with the medical team. Some of the medications used to treat lupus will need to be discontinued before becoming pregnant because they could harm the baby.
Should I continue my treatment with hydroxychloroquine during pregnancy?
Yes, this is highly recommended and there is enough research to support the use of this medication. It is safe for the mother and the baby.
Are there any related studies?
We have plans to submit a future grant to study fertility and outcomes among SARDs.
Thank you Dr. Avina for taking the time to explain SARDs and The Lupus Interactive Navigator to our readers.1