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Evening Standard
Evening Standard
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Jessica Knibbs and Nuray Bulbul

What is lupus? New treatment could end the need for lifelong medication

Katie Tinkler receiving the breakthrough treatment for lupus at University College London Hospital - (Lucy North/PA Wire)

In the first British trials, three patients in the UK have received a “groundbreaking” lupus treatment that specialists have said may be able to do away with the need for lifetime medication.

CAR T-cell therapy was previously only used for cancer patients in the UK and there is now hope it could be effective in treating lupus and multiple sclerosis.

The trial is being led by University College London Hospitals NHS Foundation Trust (UCLH) and University College London.

Medical professionals believe the treatment, which genetically alters the immune system to identify and target problematic cells, could avert potentially fatal harm to the kidneys, brain, heart or lungs.

According to preliminary findings, this one-time treatment may revolutionise treatment and eliminate the need for long-term medication.

Patients in Germany who have undergone CAR T-cell therapy are in remission and no longer need lupus medications after receiving it more than a year ago.

Katherine, 32, was the first patient in Britain to receive this treatment in July at the clinical research facility at Manchester Royal Infirmary's National Institute for Health and Care Research.

Since then, UCLH has treated two more patients, including Katie Tinkler, 50, who received her CAR T-cell therapy on November 6.

But what is lupus?

Dr Steve Iley, the medical director at Bupa, explains everything that you need to know about lupus.

What is lupus?

Lupus is a complicated condition; there are different types and people often show different symptoms on different parts of the body. It is often misunderstood by the general public.

The most common type of lupus is systemic lupus erythematosus – or SLE – which is one of the more serious forms of the condition. SLE can exhibit different symptoms and some people will experience them more severely than others. The three most common are fatigue, swollen or painful joints, and skin irritation or rashes, particularly around the hands, wrists or face.

Other symptoms can include a fever, swollen glands, headaches or migraines and stomach pains. These symptoms can also be caused by a number of issues so it is important that you speak to your doctor for a diagnosis.

Other types of lupus will just affect the skin.

Made in Chelsea TV personality Louise Thompson has lupus and has discussed her unusual symptoms, she said: “I was just on the bus going to one appointment this morning and when I stood up and started walking to the appointment honestly my knees were in such agony.

“I’ve never experienced anything like it in my life. I’ve always been so able-bodied and so active, exercise has been such a big part of my life and it’s just so rough having to adapt to all of these new medical conditions, so that’s been really tough.

“On top of that and almost worse because I can deal with fatigue, I can deal with skin, I can deal with pain but the neurological symptoms have just still been so unbearable and currently I’m dealing with this never-ending cold.

“I have mucus coming out of my nose and really bad pain in my ears and I’m not supposed to take anti-inflammatory medication, so ibuprofen, because of having ulcerative colitis or all of that.”

Singer Selena Gomez also revealed her lupus diagnosis in 2015, when she had to have chemotherapy. Since then, she has publicly denounced body shamers numerous times. She used TikTok last year to talk about trying to diet and clapped back at anyone who made disparaging remarks about her figure.

What makes people get lupus?

SLE is an autoimmune condition, meaning it is not contagious and can’t be passed from one person to another. Instead, it is caused when antibodies from the immune system mistakenly attack healthy cells or organs.

Experts still aren’t entirely certain why this happens, but it is widely agreed that there are multiple causes. Some of these are genetic – so if your parents have lupus, it’s more likely that you’ll experience it too – while others are in our control. Lots of experts believe that smoking increases your chances of developing the condition.

Lupus can also be affected by changes in hormones, from pregnancy or puberty for example, so it’s most prevalent in women of childbearing age.

How can it be treated?

Lupus can generally be diagnosed by blood tests from a doctor.

While there’s currently no cure for SLE, there are medications available to manage its impact such as anti-inflammatories, or medicines that suppress the immune system. By using these, many people are able to successfully limit the impact it has on their lives.

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