Finding an effective treatment and hope after an ankylosing spondylitis diagnosis

Life changed dramatically for Bjillian MacKinnon during a summer vacation in Prince Edward Island in 2013.

Then 28, she had a successful career as an early childhood educator and was also an athletics coach in marathon and triathlon.

“My life was very busy and very happy,” says MacKinnon, “though I slowed down a bit just before my son was born.”

Four months after his birth, she began training for an Ironman triathlon and regularly ran up to 30 kilometres a day. “I felt in the best of health,” says the Montreal resident. “I had my son and my family. Everything was good.”

Then came the vacation that signalled the end of life as MacKinnon knew it.

“I was still running up to 30 km a day,” she says. “But, by mid-week, I was having trouble even running a third of that because of fatigue, pain and stiffness. By the end of the week, I could barely sit up straight because I had such excruciating pain in my chest and spine.”

MacKinnon started losing her hair and suddenly dropped almost 20 pounds in a week. Recognizing the severity of her condition, she and her husband cut their vacation short and returned home to see her family physician, followed by an urgent referral to a rheumatologist.

“Within four months, I was diagnosed with ankylosing spondylitis,” says MacKinnon. “At the time, I was confused by the diagnosis, because I didn’t realize that younger people got arthritis. I was relieved that it wasn’t fatal but I didn’t know then how serious it was.”

Ankylosing spondylitis (AS), which affects up to 300,000 Canadians, is a form of arthritis that can cause some of the vertebrae in the spine to fuse. Symptoms include pain and stiffness from the neck to the lower back.

“People living with arthritis can often feel alone, isolated,” says Janet Yale, president and chief executive officer of The Arthritis Society. “One of the most important aspects of our work is connecting people to a community of support who understands what they’re going through, and providing them with the education, inspiration and resources to become effective self-managers. It’s all about providing solutions to live better with arthritis today while we work toward a cure.”

The key, says MacKinnon, is being on the right medication for her. She was prescribed two different drugs for six months.

“During this period,” says MacKinnon, “I tried to go back to work but failed, because I was getting worse, much worse.” By this time, she was a volunteer with The Arthritis Society and, through the society, met other arthritis patients and had a clearer idea of her prognosis.

In order to provide relief, MacKinnon’s doctor prescribed a treatment plan for her. “That turned my life right-side up again, for a while,” she says. However, seven months later, MacKinnon’s condition grew significantly worse. “I began rejecting that treatment, so I had to start the process again. And thinking that life’s going to be normal and finding out that it’s not is devastating.”

There was more devastation to come. As well as dealing with her physical pain while doctors sought the right treatment plan for her, she had to cope with the emotional stress of marital breakdown. “I wasn’t able to keep my family together and ended up divorced,” she says. “So there I was with no husband, no job, a chronic disease and a new baby. I was in quite a predicament.”

Today, after more than a year on a second treatment plan, she has attained medical stability and hope for the future. “It took about three months for this treatment plan to work properly, but it’s been a little over a year and it’s working for me. Tests show I don’t have any inflammation in my spine now. I know I won’t be able to run again, but I am able to work full-time, though I sometimes need help.”

Ken Gagnon, director of stakeholder relations for The Arthritis Society, agrees. “It is a great challenge for patients to achieve stability, so knowing they will be kept stable is of the utmost importance.”

For patients like Bjillian, engagement in their own treatment is pivotal. Gagnon says “the first step in being engaged is getting educated.” On Oct. 29 the Arthritis Society presented the Quebec Forum on Arthritis, to help people living with the disease by providing greater access to information.

According to Gagnon, MacKinnon’s experience with AS is a positive one. “Bjillian’s story shows that with a good treatment, resources and tools, a person with arthritis can live better with the disease and have more confidence in the future.”

“Having support in my life really makes a difference,” says MacKinnon. “And going through something like this makes you appreciate the good things in your life every day.”

There are many options in the treatment of autoimmune diseases. All treatments have benefits and risks, some of which can be serious, and can vary by individual. If you are living with ankylosing spondylitis, talk to your doctor about treatment that might be right for you.

Every patient deserves a treatment plan that leads to stable health.