Experimental lupus therapy brings joyful new possibilities for UK patients

A pioneering treatment designed to refresh the immune system has brought lupus into remission for most patients in an early UK trial, offering bright hope for people living with the condition and for those affected by similar autoimmune diseases.

Researchers believe the same approach may one day help treat conditions such as multiple sclerosis and rheumatoid arthritis.

Katie Tinkler, among the first people in the UK to receive the therapy, has experienced a remarkable change. Diagnosed with lupus 30 years ago, she said she had "never been this good".

Once, walking with her children could be difficult. Now she is skiing again, enjoying an active life, and no longer taking lupus medication.

Lupus affects about 50,000 people in the UK. It happens when the immune system, which is meant to defend the body, mistakenly attacks it instead. Around 90% of people with lupus in the UK are women, and many are diagnosed as young adults.

The illness can cause painful joints, skin problems and serious damage to organs including the kidneys.

Katie was diagnosed in 1993, when she was 20. She kept living fully and even worked as a fitness instructor, though she always carried steroids in case her symptoms flared.

Over time, the disease became much more severe. In the past decade, Katie’s health worsened sharply, with long hospital stays and damage to her heart, lungs and kidneys. At one point, she was close to needing dialysis.

"Lupus at its worst was in bed, unable to move, going downhill rapidly, possibly dying…now I'm living," she said.

When she spoke about life after the treatment, her delight was clear.

"It's amazing. I'm living like a normal person, I'm literally saying yes to anything. I sort of forgot that you could feel this good," she said.

The treatment Katie received at University College London Hospitals works by retraining part of the immune system to remove the cells causing harm.

Two kinds of white blood cells are central to the process: B cells and T cells. Normally, both help protect the body from infection. But in lupus and other autoimmune diseases, B cells can become harmful and produce antibodies that attack the body’s own tissues.

Doctors collected millions of Katie’s T cells and altered them in a laboratory so they would target B cells. Once returned to her body, the modified T cells destroyed both the faulty B cells and the healthy ones. After several months, fresh healthy B cells began to grow back, giving the immune system a chance to reset.

The process was demanding. Katie’s own T cells had to be taken from her blood, modified, and infused back into her body. She also needed chemotherapy to help prevent the engineered cells from being rejected.

There were risks, and no guarantee of success. Katie recalls a letter to her GP saying "she knows she might die".

But since receiving the therapy in November 2024, Katie has remained well. Her lupus medication is no longer needed, and her organs have improved.

"I can live to an old lady with these kidneys and that is phenomenal. My heart's much better, my lungs much better. My blood disorder is no longer there," she said.

She has also returned to activities she had missed, including skiing for the first time in a decade.

In the first group of six patients treated, five remain in remission. One patient’s symptoms improved, though they later had a lupus flare after 11 months.

The research team, presenting findings at the EULAR European Congress of Rheumatology, said the patients had remained well for more than 18 months.

Important questions remain, including how long remission will last and how well the treatment will perform in larger trials. Even so, specialists are encouraged by the early results.

Dr Maria Leandro, a consultant rheumatologist at UCLH, told BBC News: "If we were to have patients in remission for three-to-five years consistently, that would be a major gain in lupus, it may be longer than that, but we'll have to wait and see.

"This is clearly a significant step forward towards a possible cure, so it is very exciting."

The therapy is known as CAR-T, or chimeric antigen receptor T-cell therapy. It is already approved for some blood cancers, including certain leukaemias and lymphomas. These early results suggest it may also have a powerful role in autoimmune disease.

Because many autoimmune conditions involve similar problems with B cells, researchers hope the treatment could eventually be used more widely.

Dr Claire Roddie, from UCL, told BBC News: "We're really excited about the potential of CAR-T cell therapy for autoimmune diseases.

"Multiple sclerosis would be one condition, we've got a clinical study running right now, and rheumatoid arthritis, for instance, huge number of patients affected by this disorder… huge potential."

Katie does not know how long the benefits will last, but she is embracing the possibilities with enthusiasm.

"I want to climb mountains, I'd love to do Kilimanjaro, I'd love to do a triathlon again, I just want to participate, and I want to say yes to as many things as I possibly can."

Additional reporting by Vicki Loader.