How at-home treatments are giving patients control
Before Covid, medication for people with severe ulcerative colitis involved frequent trips to hospital, but the pandemic has inspired an increase in self-administered therapies. Jane Symons discovers how it is transforming lives
Molly O’Donoghue has just returned from eight weeks scuba-diving in Thailand. The seemingly carefree 20-year-old plays tennis competitively and is looking forward to her second year studying English literature at Edinburgh University.
But if anyone had told Molly at the age of 15 that this would be her life, she would have dismissed it as a cruel joke.
At the start of her second year of GCSEs in 2017, she noticed blood in her stools. “At first I thought it would go away, but after three or four weeks I mentioned it to my mum,” she says.
Embarrassed, Molly downplayed her concerns so it was another two or three months before she saw a GP, who suggested she eat more high-fibre foods.
Worsening fatigue forced Molly to give up the sports she loved and she experienced frequent bouts of diarrhoea and cramps.
She was still no closer to a diagnosis at Christmas, four months after her first symptoms, when her sister-in-law took her aside and asked if she had an eating disorder.
“I hadn’t noticed I was losing weight, it was so gradual,” says Molly. “When it’s someone who hasn’t seen you for a while it’s more obvious.”
When she returned to school, she was asking to go to the toilet so often during lessons that the headteacher called her parents. Molly and her mum went back to their GP in Southport and were told to go straight to the A&E department of Alder Hey Children’s Hospital in Liverpool.
“I heard the word cancer, which was really scary,” she recalls. Thankfully that was ruled out, but Molly says: “I was in and out of hospital for three months having different tests.”
Her health continued to deteriorate and she was admitted as an in-patient.
At times she was so weak she could barely stand. Finally, two months after being admitted, Molly was diagnosed with ulcerative colitis. Around 146,000 people in the UK have this form of inflammatory bowel disease. It’s an auto-immune condition which occurs when something goes wrong with the way the immune system, bacteria in the gut and environmental factors interact. This triggers ulceration and bleeding in the colon and rectum, although sometimes people can go months between flare-ups, which can make diagnosis challenging.
Dr Philip Smith, a gastroenterologist at Royal Liverpool Hospital, where Molly is now seen, says: “The key to treatment is putting the fire out as quickly as possible. If you can keep the inflammation under control, it reduces the risk of complications.” These can include an increased risk of colon cancer and surgery to remove sections of damaged bowel – or even the entire colon – and inserting a stoma so stools can be collected in a colostomy bag. Weight loss and nutrient deficiencies are common and, like many patients, Molly needed regular infusions of iron.
Molly, who describes herself as “a bit of a problem patient” when she was diagnosed, was initially prescribed 10 tablets a day to try to control the inflammation, but says, “they weren’t working and I really struggled to take my medication”. She was given medicated enemas “which worked for a little while” and was then put on steroids, which she describes as “the worst time of my life”.
“It got to the point where I thought nothing was going to work and I had to see a psychologist to overcome this, as well as my denial about being ill,” she says.
Things began to look up when Molly was put on infliximab, a man-made antibody which targets tumour necrosis factor-alpha, or TNF, an immune system protein associated with inflammation.
Dr Smith says these biologics, as they are known, don’t always work for everyone – but when they do, they can be life-changing.
However, there are potential drawbacks. Infliximab and other first-generation biologics used to treat ulcerative colitis, Crohn’s disease and other inflammatory bowel conditions are given via an intravenous infusion, which involves spending several hours in a hospital infusion unit every six to eight weeks.
Over time, the immune system can decide these therapeutic antibodies are themselves a threat and create its own antibodies to counteract them, which can render them ineffective.
When Molly turned 18, and her care transferred to the Royal Liverpool Hospital, she was offered a new form of infliximab called subcutaneous Remsima – a fortnightly injection just under the skin, which she administers herself. It was a game-changer.
Her condition is now so well controlled it has been more than a year since she has experienced a flare-up. Her risk of needing surgery and a stoma has receded dramatically and she has been able to realise her dream of going away to university.
The pandemic, and the need to keep patients with chronic conditions away from hospitals has led to far wider use of these second-generation subcutaneous biologic therapies, which patients administer themselves.
Dr Smith says that using therapies like Remsima alongside home-tests for inflammatory markers, and apps to monitor symptoms brings wins for both patients and the NHS. He says: “Patients now keep in touch via all sorts of electronic pathways and symptom-scoring questionnaires, so if someone gets a high score on symptoms we can see them within 24 hours.
“This allows us to prioritise patients who really need to be seen and do less of the routine appointments with stable patients. They have a much better quality of life because they have far more control over their disease.”
Because these DIY therapies are administered in regular doses every two weeks rather than a single intravenous dose every six to eight weeks, drug levels also remain relatively constant, which not only keeps inflammation in check, but also appears to reduce the risk of the body producing anti-drug antibodies.
The therapy has already cut Molly’s risk of cancer, and Dr Smith is hopeful she will avoid surgery in future. As she says: “It has changed my life.”
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I had to see a psychologist because I thought nothing was going to work