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Finally a medicine for lupus – the paralyzing and incurable condition that can cause lifelong scarring

Imagine having a disease that makes your face erupt in a rash, your hair falls out, and your joints so sore that you can’t hold a mug of tea. Although the medications prescribed to treat it can relieve symptoms, the relief is temporary and short-lived.

One of the most important treatments – oral steroids – ultimately makes it worse, causes significant weight gain and increases your risk of broken bones, heart disease and strokes.

For an estimated 15,000 people in the UK living with a condition called lupus, this is a daily reality. As if the disease itself was not bad enough, the cure for high doses of oral steroids is just as unattractive.

For decades, these drugs, and their significant side effects, were the only major gun doctors who had to combat this paralyzing and incurable condition. There are newer drugs that help, but often have a limited benefit.

Pop singer and lupus patient Seal with his ex-wife, supermodel Heidi Klum, in 2011

Pop singer and lupus patient Seal with his ex-wife, supermodel Heidi Klum, in 2011

But at the end of last year, researchers discovered what they think is the biggest breakthrough in the treatment of lupus in decades.

Remarkably, the drug, called anifrolumab, is able to completely eliminate symptoms such as the severe rash on the face and painful, swollen joints, and means that patients can reduce, or even eliminate, the use of dreaded steroids. can come.

Instead, they only need to go to the hospital once a month for a 30-minute injection of the liquid medicine into a vein in the arm.

It is even reported that scientists are working on a do-it-yourself injection kit that patients can use to treat themselves at home.

British doctors who are trying out the groundbreaking new drug say that it can revolutionize the treatment of the most serious form of the disease – systemic lupus erythematosus or SLE.

“It is the first drug ever developed specifically for the treatment of lupus,” says Dr. Ed Vital of the Leeds Institute for Rheumatic and Musculoskeletal Medicine. “The patients who benefit the most are those with severe rashes and painful joints who do not respond to all other treatments. For many, the result is one of the worst symptoms. “

Lupus develops when the body’s immune system gets confused and attacks healthy cells and tissues. Often this is the result of something rather harmless, such as a mild viral infection that patients didn’t even know they had. As a result, the bloodstream is flooded with interferons, a type of protein that normally patrols the body in search of invading viruses to attack.

In lupus the production of interferons is so strongly stimulated that the proteins cause damage to the skin, joints and important organs.

The disease owes its name to Latin for “wolf” because the facial disorders it causes are compared to the bite of a wolf. In rare cases, skin rashes can be so severe that they lead to deep, pitted scars on the cheeks. The condition also makes patients so sensitive to sunlight that even a few minutes outdoors on a hot day can blow the skin, inflammation of the joints, and swelling of the internal organs – increasing the risk of organ failure.

Dr. Vital said: “It can leave dimples in the face and that is something young women – who are often affected – really do not want.”

But men can get it too. Award-winning singer Seal, best known for his hit Kiss From A Rose and his marriage to supermodel Heidi Klum, developed a form of the disease in his early 20s.

“It can leave dimples on the face and that is something young women – who are often the victims – really do not want,” Dr. said. Vital

Proof of the 56-year-old’s condition can be seen on his face, with significant scars on his cheeks.

The new anifrolumab drug makes the ugly sores disappear before scars occur. It works by binding to receptors on the surface of cells in the body – the same receptors to which interferon proteins normally stick.

This prevents interferon from entering cells in the skin, joints and organs and causing the painful symptoms.

It is not yet clear whether patients should continue to use the drug for the rest of their lives.

Currently, the drug is limited to patients participating in clinical trials in the north of England.

Astra Zeneca, the company that has developed anifrolumab, says it hopes it will be available to NHS patients in the UK over the next two to three years.

A patient whose life has already been transformed is 45-year-old Sam Coates from Leeds. Until recently, Sam lived like a virtual hermit and spent much of her time at home for fear of showing others the red, angry rash that covered her face.

The mother of two was diagnosed with lupus at the age of 25 after she noticed a red rash on her cheeks.

Her doctor diagnosed rosacea – a common skin complaint in adult men and women – and gave her a cream that only made it worse.

She soon noticed that her knees, fingers and wrists hurt all the time.

“I couldn’t even get a cup of tea and felt so tired that I would fall asleep during the day,” she says.

“I must have visited my doctor 30 times in just eight months before I was finally referred to a rheumatologist, who did blood tests and diagnosed lupus. I had never heard of it. “

Sam was given a high dose of oral steroids and began to feel better within a few weeks.

The joint pain eased, her hands worked well again, and she began to regain her energy. But in the following years, she needed increasingly higher doses of the medication to alleviate the symptoms.

Sam also received seven stones in the course of her illness – a common side effect of steroids.

“My weight became so bad that I started developing osteoarthritis with early onset. And if I even went in the sun for a few minutes, my face, chest, back and legs would blister. “

So when the opportunity arose in 2017 to participate in a groundbreaking new test, Sam seized it.

She started visiting her local hospital every month to inject the new medicine into a vein in her arm.

After only three or four treatments, she noticed a significant improvement in her health. “The rash dropped, my joints felt less stiff and painful and my weight started to decrease. My skin has been completely clean for over a year now – no trace of a rash.

“I was able to socialize more and enjoy warm summer days by the sea with my family.

“Before I received this new medicine, I couldn’t even hold a pen.”

Sam has reduced her daily dose of steroids from 25 mg to just 5 mg.

“And I’ve lost almost three and a half stones,” she says. “This medicine has completely changed my life.”

Dr. Vital says that much more like Sam could benefit.

“She has had such a terrible time with this disease.

“But the new medicine has made a huge difference in her life.”