Richard's story - ankylosing spondylitis

When Richard was 37, he felt more like 97.

The once fit, active electronics engineer was reduced to spending his days in bed, wracked with the pain and fatigue of ankylosing spondylitis, missing out on his children growing up, a shadow of the man he once was.

Richard talks about how anti-TNF therapy has changed all that but access to the drugs was a struggle.....

Superfit Richard spent three years prospecting for oil in the Sahara desert and when he wasn’t working as a chartered electronics engineer with the British Antarctic Survey spent much of his energy on climbing, canoeing, scuba diving, ski-ing, and hill walking.

But in 2000 he was diagnosed with ankylosing spondylitis and despite his hectic and active lifestyle, it was clear that Richard's condition was getting progressively worse. He suffered increasing back and chest pains and he had to leave the job he loved.

Stubborn and fiercely independent, he couldn't bring himself to admit the limiting effects of his illness, so he set himself up in business on a small scale as a woodworker. This too became harder and harder for him to cope, and in June 2002 he finally collapsed into bed. The condition was soon affecting his heels, ankles, knees, hips, shoulders neck, fingers and wrists, as well as his lower back, and drugs had no effect.

The pain was so intense he had to get up at 5am every morning and pace around to try and get relief. But even worse was the overwhelming fatigue. During his particularly bad patches after he had given up work he spent most of the day in bed, resting and sleeping. He could only walk short distances with walking sticks.

His illness was putting incredible strain on his family and his wife had to give up work to look after Richard and their two young daughters. “Life,” says Richard, with considerable understatement, “was bloody awful.”

What turned it round was getting onto a trial of anti-TNF therapy etanercept at Addenbrooke's Hospital in Cambridge. The result was dramatic.

“Within two weeks I was noticing the benefit, I started to feel better, and best of all, the drug alleviated most of the fatigue; the stuff was just magic,” says Richard. But that wasn't the end of the story. By January, the trial had ended, and he had to come off the drug. Richard appealed to the local primary care trust to fund his treatment. The trust agreed to fund Addenbrooke's to provide anti-TNF therapy to a small number of AS patients who had been on the clinical trial, and Richard was one of them.

Following treatment Richard was eventually well enough to go back to work, and his life returned to near normal.

“My life, my wife's life and our kids' lives is so much better. I still get more tired than I used to, but I was incredibly lucky to get funding for the drugs and to get my life back because I know at the time there were other people out there in a similar situation to me who weren’t so fortunate,” he says. “I was on incapacity benefit, disabled living allowance, child tax credits, I was costing the state more in benefit than the treatment would have cost; it's a no-brainer.

“I know anti-TNF is an expensive treatment but the cost-effectiveness of this treatment is obvious when you consider the costs to the taxpayer of people being forced out of work onto benefits at a young age.”

NICE approved anti-TNF therapy for ankylosing spondylitis in May 2008.

Richard’s story first appeared in Arthritis Today in 2006.