Terry Aretz, a 62-year-old woman from Montana, was accustomed to a busy life – serving as executive director of a non-profit, sitting on multiple boards, and volunteering as a museum docent. But in January 2020, a creeping fatigue began to leisurely her down, accompanied by aching muscles and joints. The discomfort escalated to the point where she found herself unable to rise from the couch one day, marking the beginning of a challenging journey to understand and ultimately treat a debilitating autoimmune condition.
Aretz’s experience highlights the often-delayed diagnosis common with autoimmune diseases. She also experienced severe sinus infections for weeks, prompting her to seek a specialist’s opinion. After scans revealed calcification in all the salivary glands on the left side of her face, she received a diagnosis of Sjogren’s syndrome, a condition she had never heard of. Sjogren’s syndrome, affecting an estimated 500,000 people in Britain, is an incurable autoimmune disease where the body’s immune system attacks its own moisture-producing glands and other tissues.
The disease disproportionately affects women, with those aged 40 to 60 being nearly ten times more likely to develop it than men. Even as dryness of the mouth, eyes, and skin are hallmark symptoms, Sjogren’s can also cause systemic issues, impacting the kidneys, blood vessels, liver, pancreas, nerves, and lungs. In some cases, it can even increase the risk of developing lymphoma, a type of blood cancer, with one in 20 patients facing this potential complication.
The Long Road to Diagnosis and Traditional Treatments
For many, managing Sjogren’s syndrome has historically meant focusing on symptom relief rather than addressing the underlying cause. Common treatments include lubricating eye drops, medications to stimulate saliva and tear production, and immune-suppressing drugs like hydroxychloroquine to manage joint pain and fatigue. However, these therapies often prove ineffective or come with unpleasant side effects, such as severe headaches and nausea. Aretz’s initial symptoms rapidly worsened after her diagnosis, leaving her in debilitating pain, unable to function in her daily life.
“I was completely debilitated by the pain,” Aretz recalled. “I went from being busy sun-up to sun-down to curled in the foetal position in bed all day, with pain that felt like it ran from my fingertips to my toenails.”
A Revolutionary Fresh Treatment: Ianalumab
Today, Aretz’s life has been dramatically transformed thanks to a pioneering monthly injection called ianalumab. This new treatment offers a potential breakthrough for those living with Sjogren’s syndrome. Ianalumab works by blocking and destroying the immune cells that attack the tear and saliva-producing glands, significantly reducing the symptoms of the disease in clinical trials. The drug has been granted breakthrough therapy status by the US Food and Drug Administration, a designation reserved for treatments targeting serious or life-threatening conditions.
Professor Simon Bowman, a consultant rheumatologist at University Hospitals Birmingham NHS Trust, believes ianalumab could be “revolutionary” in the treatment of Sjogren’s. He explained that it represents the first targeted treatment for the disease, with the potential to not only alleviate symptoms but also prevent and even repair long-term damage.
A Trial and a Return to Life
Aretz gained access to ianalumab through a clinical trial, requiring a six-hour journey to the hospital. Despite the uncertainty of receiving the actual drug, she persevered. Within months, doctors began to observe positive changes, noting a 60 percent increase in her saliva production. Her fingernails and hair began to grow again, her eyes felt less dry, and, crucially, she regained the ability to get out of bed.
Symptoms she had lived with for decades, including dry eyes, skin irritation, and Raynaud’s phenomenon (a condition causing reduced blood flow to the extremities), began to subside. After a year in the trial, Aretz was offered the opportunity to continue receiving the drug for an additional five years, ahead of its wider rollout, and she readily accepted.
While ianalumab isn’t without side effects – Aretz experiences occasional low moods – Professor Bowman notes that it won’t be universally effective, but similar medications are in development. Aretz herself feels she is living proof of the treatment’s potential. “I can participate in life again,” she said. “I’m so excited for this drug to come out for everyone.”
Looking Ahead: Access to Ianalumab on the NHS
Experts anticipate that ianalumab could become available on the National Health Service (NHS) in the coming years, offering hope to the thousands living with Sjogren’s syndrome in the United Kingdom. The potential for wider access to this targeted treatment represents a significant step forward in managing a condition that has long lacked effective, curative options. The journey for patients like Terry Aretz underscores the importance of continued research and development in the field of autoimmune diseases.
Disclaimer: The information provided in this article is for general knowledge and informational purposes only, and does not constitute medical advice. It is essential to consult with a qualified healthcare professional for any health concerns or before making any decisions related to your health or treatment.
The rollout of ianalumab on the NHS is expected to be discussed further at the next National Institute for Health and Care Excellence (NICE) meeting in June 2026. We will continue to follow this story and provide updates as they become available. Share your thoughts and experiences with autoimmune conditions in the comments below.
