It started with a burning pain in her finger and the ball of her foot. Within a month, Cheryl Koehn, a former Olympic volleyball player, was in agony as more than 35 joints in her body became so swollen that she was wheelchair bound.
Ms. Koehn, then aged 27, was diagnosed with rheumatoid arthritis.
She spent the next 15 years struggling to recover some of her physical functioning. It was not until 2004 that she received her first infusion of biologics – a class of protein-based drugs derived from living cells. Twelve hours later, she held hands with her husband and partner of three years for the first time.
“You couldn’t touch my hands before – they were so painful and swollen,” says Ms. Koehn of Vancouver. She credits biologics, along with other medications, for helping her claw back 70 to 80 per cent of her ability to do everyday tasks. “I wouldn’t be able to walk without them.”
But if Ms. Koehn were diagnosed today, there’s a good chance doctors could have pushed her disease into remission from the start.
Early and aggressive treatment of rheumatoid arthritis is the medical breakthrough that few people – including many family doctors – have ever heard of.
Rheumatoid arthritis is an auto-immune disorder, in which the immune system mistakenly attacks the body’s own tissues leading to inflammation of the joints and surrounding tissues. (Osteoarthritis, a less severe form of arthritis, tends to be caused by wear and tear of the joints and is often associated with aging.)
One in 100 Canadians has rheumatoid arthritis. Although it typically flares up in adults aged 40 to 50, it can strike at any age. But the disease can be halted if it’s caught early enough.
More than 15 years ago, researchers discovered that patients given a two-fold increase in dosage of a conventional drug for rheumatoid arthritis had a good chance of leading a normal life if they received treatment within six months of the first symptoms.
High-dose methotrexate – an older drug also used in chemotherapy – is effective in many patients, says Kam Shojania, director of the division of rheumatology at the University of British Columbia.
The side effects of methotrexate can be nasty, though, including nausea, fever, fatigue and low white-blood-cell count, as well as lung and liver lung damage. A newer strategy is to combine methotrexate with two other disease-modifying drugs as a form of “triple therapy.”
Nevertheless, the biggest advance in rheumatoid arthritis treatment is biologics, Dr. Shojania says. Now in use for more than a decade, biologics target specific steps in the inflammation process without wiping out the entire immune response. Compared with older drugs, which may take two to three months to start working, biologics often act within two weeks.
Although they do increase the risk of infections, biologics “keep patients working, functioning, being members of society,” Dr. Shojania says. “It’s amazing.”
Biologics are expensive, however. A year’s worth of injections or infusions costs upward of $20,000. Although these medications are covered to varying degrees by public-health plans, in most provinces, patients do not meet the criteria for a biologic unless they fail to respond to conventional drugs within six months.
That’s the treatment window for potential remission – before the disease attacks joints, cartilage and bones.
“If you wait six months and you have active rheumatoid arthritis, you will have irreversible damage,” says Edward Keystone, a professor of medicine at the University of Toronto and one of Canada’s leading rheumatologists.
Dr. Keystone notes that in Canada, half of patients with rheumatoid arthritis are not being seen by a specialist. Family doctors often mistake the disease for osteoarthritis and dismiss the symptoms as a normal problem of aging, he says. “This a big hurdle for us.”
Treatment delays may determine whether the patient remains productive or ends up like the 25 to 50 per cent of patients who are unable to work within 10 years of the disease onset, according to arthritis researcher Diane Lacaille at UBC.
The failure to diagnose the disease within six months is “akin to malpractice,” says John Esdaile, a Vancouver-based rheumatologist and founder of the Arthritis Research Centre of Canada.
“Medical schools are not doing a good job of teaching even rudimentary aspects of musculoskeletal health,” he says, adding that family doctors are “really not up to date” in recognizing the symptoms of rheumatoid arthritis and the urgency of a referral to a rheumatologist.
To raise awareness, Dr. Esdaile and colleagues recently developed ArthritisID PRO, an app designed to help doctors get up to speed on the latest guidelines for detection and treatment.
Together with Arthritis Consumer Experts – a grassroots organization founded by Ms. Koehn in 2000 – Dr. Esdaile and his team also launched ArthritisID for patient use. Both apps are free downloads at the iTunes store.
Dr. Esdaile notes it’s crucial for patients to talk to a doctor if they experience any symptoms of rheumatoid arthritis, which tend to increase over a period of weeks or several months. Patients may have sore hands and knees or feel like there are stones in their shoes. They may feel unusually tired and stiff for more than an hour each morning, he says.
“The public needs to know these symptoms aren’t normal.”