I was wrapped neck to toe in a heavy canvas body suit, laced tight and Velcroed so that I could barely move.
Made by a German rheumatologist whose wife suffered from the disease, the suit ensured that I walked stiffly, climbed stairs slowly and awkwardly, turned my neck with my whole body and avoided any finger activity. Door knobs were my Waterloo, levers my salvation.
This is what an episode of rheumatoid arthritis feels like, I said, gleeful in the knowledge that I would soon step out of the suit. But I didn’t know the half of it. My suit simulated the limited range of motion people with the disease experience, but I could only imagine the pain.
Brian Twohig, 62, vividly knows that pain. “Sometimes it was so bad that just brushing my hand across this chair would be . . .,” he shuddered at the memory of the pain he encountered when his rheumatoid arthritis flared up.
A high-school English teacher with a passion for cycling, Twohig’s body turned on him in 1988, when he was 45 years old.
His disease worsened with each flareup. Just pulling up the sheets on the bed became torturous, his fingers too gnarled and painful to do the job. To put on his socks, he had to lie them on the floor and wedge his feet into them. He reduced his class load at school and stopped writing on the blackboard when he could no longer hold the chalk. Finally he retired, still in his 50s.
Rheumatoid arthritis, also known as RA, is an auto-immune disease that attacks the lining of the joints, causing the lining to thicken and the joints to swell. It strikes one per cent of Canadians, three-quarters of which are women, most in their working prime, between 25 and 50 years old.
With no cure available, doctors in the past did little more than manage the pain, explains Dr. Kam Shojania, a rheumatologist in Richmond and a clinical associate professor of medicine at the University of B.C. There was no rush to treat them.
“Now we see that the best therapy is early,” he says, adding that if doctors prescribe disease-modifying drugs within the first six months, the disease can go into long-term remission.
“If you miss that window of opportunity, it’s very sad. You can still treat it, but you are not going to put them in remission.”
Twohig’s family doctor didn’t recognize the symptoms and by the time a new doctor prescribed Methotrexate — the first and best disease-modifying drug — that window had closed. The medication helped, but he still got flareups and they were getting worse each time. By 2002, he not only couldn’t ride his bike, he could barely walk during an episode. Long term, his life didn’t look good.
Twohig’s experience is very common, says Shojania. In fact, a B.C. study by the Arthritis Research Centre of Canada of 27,700 individuals with rheumatoid arthritis between 2001 and 2005 found that only 10 per cent of sufferers treated by a family doctor received the disease-modifiers. Three-quarters of those followed by a rheumatologist received the drugs, but less than half the total number of people with RA had seen a specialist in the past five years.
Luckily for Twohig, he did get a rheumatologist who eventually included him in a clinical trial in 2003 for a new form of drug called biologics. A month into the therapy, he climbed back on his bike and rode the toughest part of the Tour de France route with his buddies. He has been symptom free ever since.
It’s a success Shojania is happy for, noting biologics, which suppress the immune system, work for about 60 per cent of patients. However, Pharmacare still restricts their use to those who don’t respond to cheaper medications.
With just disease-modifiers at their disposal early on, Shojania wants to ensure that family doctors, medical students and the patients themselves recognize early warning signs and get referred to a specialist right away.
That brings us back to the suit.
Shojania plans to strap medical students into it when he teaches the short unit on rheumatoid arthritis in September. He figures with medical students getting only four lectures on the illness, the suit will grab their attention better than a Power Point presentation.
“Every disease is competing for med students’ attention,” he says. “You can talk about rheumatoid arthritis, but med students are all young, healthy. The suit will maybe help them remember the symptoms. Remember that: ‘Oh yes, I think am supposed to refer early because some things can be done.’ ”
Others, like occupational therapists, help-line operators and care-givers, will also get an opportunity to experience the suit’s rigidity later on.
The drug company Janssen-Ortho and McNeil Consumer Healthcare have developed another method to increase awareness. A simple checklist with more than 100 different types of rheumatism, it’s crucial for physicians to be able to differentiate between them, says Dr. Simon Huang, a Vancouver-based rheumatologist who supports the checklist.
And while things are better now, for a long time RA and other forms of arthritis were not taught well, says Huang. Physicians weren’t taught to differentiate the different types of pain or the different types of arthritis.
“Now they teach students a great deal more than they taught us. But lots of doctors have difficulty recognizing pain,” he says.
If the patient can’t push her index finger back 90 degrees without pain, it is quite likely she has rheumatoid arthritis and should be referred to a specialist, says Shojania.
Blood tests used to help diagnose the disease are very unreliable, says Shojania. Fully half of the results are wrong in the first year and one quarter of patients with RA will never have a positive blood test. So because a proper diagnosis depends on asking a lot of questions about the symptoms and family history, both doctors
and patients benefit from knowing what is to be asked.
“[Patients] don’t know what type of information is useful to doctors,” he says. “When they read the checklist, they think ‘Oh, this is what they want me to pay attention to.’ ”
All that saves time, which may keep somebody with RA out of the real-life motion-restricting suit.
The checklist is available on the Canadian Pharmacists Association website at www.pharmacists.ca
Reprinted with permission from the Vancouver Sun