Life’s getting better thanks to clinical trial
A Reedy Creek man is the first and only Australian to participate in an international clinical trial to treat a rare autoimmune disease that left him unable to swallow.
In 2014, Michael Brooks was diagnosed with myasthenia gravis – a neuromuscular disease that causes weakness and fatigue in the skeletal muscles.
“It was one Saturday morning. I woke up and I couldn’t speak, I couldn’t swallow, my eyes wouldn’t stay open,” the 77 year old said. “I thought I had a stroke.”
Since then, Mr Brooks has lived with chronic double vision and is plagued with bouts of fatigue that could render him unable to walk, talk or swallow food.
In the most severe cases, the condition can leave a person unable to breathe.
Approximately 700,000 people are affected by myasthenia gravis worldwide and about 1900 in Australia. There is no known cure and anyone could develop it.
Gold Coast University Hospital neurology staff specialist Dr Arman Sabet said he was currently treating more than 100 patients – both young and old – living with the condition.
“It’s very rare for someone with this condition to be cured of it, or to get to a point where they no longer require medication to be without symptoms,” he said.
“And depending on the severity, it can affect their ability to work or patients can be on a ventilator in the ICU.”
Existing treatments require patients to undergo a threehour IV transfusion for a cocktail of medicines. For the majority of patients, the treatment yields little to no relief.
However, the multinational Phase III clinical trial run by Janssen Research and Development will test the efficacy and safety of Nipocalimab IV infusions.
Since joining the trial, Mr Brooks said his life had significantly improved.
“My double vision is gone and my golf game is better – it’s not easy hitting the ball into two holes,” Mr Brooks said.
“I don’t get as tired anymore by talking and I can keep my eyes open.”
Under the trial, for the first six months only 50 per cent of participants are administered the actual medication. The rest receive a placebo.
“I don’t know which one I’ve got – but I don’t see how a placebo could get rid of my double vision,” Mr Brooks said.
Dr Sabet said the condition impacted every aspect of a patient’s life, which could affect them severely mentally.
“So that’s why (this trial) is really important,” he said.
I couldn’t speak, I couldn’t swallow, my eyes wouldn’t stay open
Michael Brooks