Drug gives 'new lease on life'
SALLY Carkeet has gone fishing.
It might be a simple pleasure for many, but for this avid angler, diagnosed in her mid-30s with crippling rheumatoid arthritis, heading to the week long Rainbow Beach Family Fishing Classic is a dream come true.
Relief from the debilitating pain in her joints and fatigue is due to a new rheumatoid arthritis treatment, actemra (tocilizumab).
Actemra will be listed on the Pharmaceutical Benefits Scheme from Sunday and available to thousands of Australians living with this incurable disease.
Ms Carkeet, a nurse and Quality Manager for Gympie and South Burnett private hospitals, said the treatment has given her “a new lease on life”.
As a child, she watched her mother, a gifted pianist, suffer excruciating pain from the autoimmune disease.
“It was really sad,” she reflected. “I’d sleep with my hands tucked up under my buttocks so they wouldn’t get crooked like hers.”
Unfortunately, Sally was stricken with the condition when she was just 35 years old.
Before being diagnosed she’d led a busy lifestyle as a nursing unit manager.
The “horrendous pain” turned her life upside down.
Every morning, with the assistance of her husband, Sally would have to rise at 4am to ensure she had enough time to start her shift at 7am.
Once she finally arrived at work she would feel exhausted.
In the end she had to stop clinical nursing because it was too physical.
Eventually, having tried various drugs with limited success and, as a last resort, she asked doctors to use her as “a crash test dummy” to trial new treatments.
“I had swollen, painful joints – my hands were like clubs – and it’s the tiredness, waking up each morning and not knowing how you would cope with each day. Your quality of life is just awful,” she said.
Mrs Carkeet saw an improvement after just one week on the trial.
“I knew I’d been given the drug and not the placebo because I actually found a knuckle!”
Now, some five years since that first trial treatment, she urges anyone suffering from rheumatoid arthritis to see a rheumatologist.
“In this day and age, people don’t need to end up disabled or put up with pain,” she said. “Rheumatologists have an endless supply of research available to them and there are many drugs out there – but you have to get the right one for you.”
With that said, Ms Carkeet couldn’t get away fast enough; the fish were starting to bite.