Katie Tinkler says she has "never been this good" since being diagnosed with lupus 30 years ago. The 50-year-old from Surrey was one of the first patients to receive an experimental treatment that resets the immune system – and it has put her disease into remission.
"I'm living like a normal person, I'm literally saying yes to anything," she told the BBC from her kitchen in Surrey, a glitterball dangling from the ceiling. "I sort of forgot that you could feel this good."
“Experimental immune reset treatment puts lupus patient Katie Tinkler into remission after 30 years.”
Lupus, which affects around 50,000 people in the UK, causes the immune system to attack the body. Women make up 90% of cases and are typically diagnosed as young adults. The disease leads to joint pain, skin conditions and damage to organs including the kidneys.
When Katie was diagnosed in 1993 at age 20, she refused to let it take over her life. She worked as a fitness instructor but always kept a packet of steroids handy in case of a flare-up. Over the past decade, the disease became much more aggressive – "pretty horrendous", she said – requiring long hospital stays as it damaged her heart, lungs and kidneys, bringing her to the brink of dialysis.
"Lupus at its worst was in bed, unable to move, going downhill rapidly, possibly dying… now I'm living," she said.
The treatment, carried out at University College London Hospitals, works by engineering a civil war within the immune system. Scientists took millions of Katie's own T cells and genetically modified them in the laboratory. The targeting mechanism was changed so that the T cells attack and destroy B cells – the white blood cells that go rogue in lupus and produce antibodies that attack the body. Once injected, the modified T cells destroy both rogue and healthy B cells. Months later, new healthy B cells grow, effectively resetting the immune system.
There were no guarantees it would work. But a year and a half after the procedure, Katie is off all lupus medication and has regained her energy. She once struggled to walk with her children, but now she can ski. "It's amazing," she said. Experts say the approach could potentially treat similar autoimmune disorders including multiple sclerosis and rheumatoid arthritis.
The treatment has now been given to patients on the NHS, with some going into remission. Katie is among those who no longer need medication to manage her condition.