Terry thought she just had aching joints then was diagnosed with deadly immune condition Sjogrens. Now she’s been cured by a monthly jab doctors say is ‘revolutionary’… and now it’s coming to the NHS

Terry Aretz, who worked as the executive director of a nonprofit, served on various boards, and was an educator at a museum, was a “true enthusiast.” But in January 2020, the 62-year-old actor started to slow down.

‘I felt exhaustingly tired all the time and my muscles and joints started to ache,’ he says. ‘Then one day I came home from work, laid down on the sofa and couldn’t get up.’

Terry, a mother of two, also had serious sinus infections for weeks. Thinking these might be related to his exhaustion, he sought a referral to see an ENT specialist at his local hospital in Montana.

After scans and a physical examination, the doctor found that all the salivary glands on the left side of his face were calcified.

‘He told me I was a perfect candidate for Sjögren’s syndrome,’ says Terry. ‘I’ve never even heard of this.’

Sjogren’s disease, which Terry was officially diagnosed with weeks later, is an autoimmune disease for which there is no cure. Around 500,000 people in Britain are thought to have the disease. And women between the ages of 40 and 60 are almost ten times more likely to have this disease than men.

In up to 40 percent of patients, Sjögren’s causes the immune system to attack healthy joint tissue, causing inflammation and pain. But it also affects the moisture-producing glands, which means symptoms may be milder: dry mouth, eyes and skin.

The disease has also been shown to damage the kidneys, blood vessels, liver, pancreas, nerves and lungs. In fact, one in 20 patients may develop lymphoma, a type of blood cancer.

Treatments focus on managing symptoms rather than curing the disease. Patients are often prescribed lubricating eye drops, medications to stimulate saliva and tears, and immune-suppressing medications such as hydroxychloroquine to help with joint pain and fatigue.

For most people, these treatments are ineffective and can cause side effects such as severe headaches and nausea.

A few weeks after his diagnosis, Terry’s symptoms took a sudden and dramatic turn for the worse.

‘I was completely weakened by the pain,’ he says. ‘I went from being busy from sunrise to sunset to curled up in the fetal position in bed all day with pain extending from my fingertips to my toenails.’

But today Terry’s life changed. He’s back to spending time with his family, meeting friends for lunch, and even exercising again.

Solution? Pioneering monthly injection experts hope it will soon be available on the NHS.

The drug, called ianalumab, blocks and destroys immune cells that attack the body’s tear and saliva-producing glands. In trials, it quickly and significantly reduced Sjögren’s symptoms.

The treatment was granted breakthrough therapy status by the US Food and Drug Administration; This is a name designed to expedite medications that target serious or life-threatening conditions.

Experts say it could be available on the NHS within the next few years. ‘This could be revolutionary,’ says Prof Simon Bowman, consultant rheumatologist at University Hospitals Birmingham NHS Trust.

Ianalumab will be the first targeted therapy for Sjogren’s disease and may help prevent or even repair long-term damage caused by the disease.

Prof Bowman adds that by treating the underlying cause of the disease, the drug can reduce the risk of more serious complications.

Access to treatment for Terry was provided through a clinical trial at a hospital six hours away by car.

Terry recalls that the journey was excruciating; especially since there is no guarantee that he will get the medicine.

But within a few months he realized he had gotten the real thing. ‘A doctor was doing an examination at each visit, and they started noticing changes, such as my saliva production increasing by 60 percent,’ he says.

‘My nails and hair started growing back, my eyes were less dry and I was able to get out of bed within three months.’

The symptoms he had ignored for decades disappeared: dry eyes, skin irritation from perfume or makeup, and even Raynaud’s phenomenon, in which poor blood flow causes fingers and toes to become cold and bruised.

A year later, when the trial ended, Terry was offered the option of using the drug for another five years before making it more widely available. He accepted immediately.

Ianalumab is not completely free of side effects. For Terry, this occasionally causes demoralization.

Prof Bowman adds that this will not work equally for everyone. However, there are also similar drugs that may be in development.

Terry believes he is proof of the potential of these treatments.

‘I can rejoin life,’ he says. ‘I’m so excited that this drug is coming out for everyone.’