‘Urgently needed’ treatment package for patients with Sjögren’s syndrome being developed
Published on 04 August 2014
When Michelle Harrison developed Sjögren’s syndrome – a severe but little-known autoimmune condition that makes it difficult for sufferers to cry and to swallow – at the age of 17, her condition went undiagnosed for years.
She was accused of being an attention-seeker and at one stage she was even admitted to hospital with suspected meningitis, such was the poor level of awareness of the condition.
Once Michelle, from Newton Aycliffe, finally got to see a rheumatologist at the Freeman Hospital in Newcastle, her symptoms of dry eyes and mouth, joint and muscle pain and extreme fatigue were instantly identified.
Since then Michelle, now aged 41, has been on various cocktails of drugs, including steroids, anti-malarials and for the past year, methotrexate, which over the years have kept her symptoms in check to an extent.
An IT systems manager at James Cooke Hospital in Middlesbrough, she holds down a responsible job – and says her sheer ‘bloody-mindedness’ enables her to keep going.
She is currently a patient of Dr Fai Ng at the Freeman Hospital in Newcastle, who is running the north east arm of Arthritis Research UK’s £1m multi-centre clinical trial testing the effectiveness of a drug called rituximab, which knocks out the body’s B-cells. (Rituximab did not work for Michelle.)
Says Michelle: “No-one has ever heard of Sjögren’s or lupus and people always say that I look so well. When the lupus rash came out it felt like ‘finally, there is something people can see!’
“Fatigue is the worst thing. At least with the dry eyes you can use eye drops and do something to alleviate it; with a dry mouth you can chew something; and for pain there are painkillers, but the fatigue is bone-crushing. You get no refreshment from sleep and you physically start shaking with tiredness.
“We need a better awareness of Sjögren’s syndrome and a better deal for patients.”
It’s stories like Michelle’s that prompted a Newcastle researcher to develop an ‘urgently needed’ treatment package for people with Sjögren’s.
Specialist occupational therapist Kate Hackett at Newcastle University has been awarded a four-year training fellowship of £176,000 from Arthritis Research UK to develop an evidence-based package of treatment.
“As well as the classic symptoms of dry eyes and mouth, fatigue and muscle and joint pain, people with the condition have great difficult in carrying out everyday activities such as eating and shopping,” explains Ms Hackett.
“The degree of disability is similar to those affected by chronic fatigue syndrome. However, patients often receive little help with managing their daily activities, which is in stark contrast to those with chronic fatigue.
“Current drug treatments may help with some of their physical symptoms, but do little to improve their ability to manage their everyday lives. Therefore there is an urgent need to develop an effective treatment to improve their quality of life.”
As part of her study Ms Hackett will investigate current treatments, and collect the views of patients, carers and healthcare about what would improve their quality of life.
By the end of the fellowship she will have developed a treatment package that will aim to enable patients like Michelle to effectively manage their daily activities and enjoy a better quality of life, as well as a manual to train health professionals how to deliver it.
Sjögren’s syndrome is a condition that mainly affects the glands that produce saliva and tears, causing a dry mouth and eyes. It also leads to extreme fatigue, and other internal organ involvement. It’s estimated that half a million people in the UK have Sjögren’s syndrome, which most commonly affects women aged 40-60.