An innovative research project which sought to explore the relationship between eye disease and arthritis has changed the life of a woman from Holt, Norfolk.

Eastern Daily Press: Carol Weyman took part in a trial at NNUH. Photo: NNUHCarol Weyman took part in a trial at NNUH. Photo: NNUH (Image: Archant)

Carol Weyman had suffered from back pain for more than 20 years.

She had been living in London undertaking a stressful job in the City.

And although Mrs Weyman had been to see her GP on many occasions about her ongoing pain, she had only been offered painkillers and no further investigations were undertaken.

She arranged private physiotherapy, osteopathy and acupuncture but none of these treatments helped her in the long-term.

Eastern Daily Press: Carol Weyman was able to ride a horse for the first time in 20 years after taking part in a trial at NNUH. Photo: NNUHCarol Weyman was able to ride a horse for the first time in 20 years after taking part in a trial at NNUH. Photo: NNUH (Image: Archant)

When her husband retired from the Metropolitan Police three years ago, Mrs Weyman and her family decided to find a quieter life in Norfolk. Having moved to Holt, and despite the slower pace of living in rural Norfolk, her back pain became increasingly severe.

On many occasions, she woke up in the middle of the night in extreme pain.

'It had got so bad that we called the 111 service, who referred us to the out-of-hours GP service and I was prescribed Tramadol and Diclofenac,' said Mrs Weyman.

'By this point I was getting so frustrated and couldn't help feeling that life wasn't going to get better.'

Eastern Daily Press: Dr Karl Gaffey with Richard Bacon MP. Photo: NNUHDr Karl Gaffey with Richard Bacon MP. Photo: NNUH (Image: Archant)

Mrs Weyman had also experienced episodes of sensitivity to light and blurred vision. An eye hospital in London had diagnosed this as recurrent uveitis, an inflammation of the middle layer of the eye causing pain, sensitivity and poor vision.

Having moved to Norfolk, Mrs Weyman's uveitis resurfaced and she was referred to the eye clinic at the Norfolk and Norwich University Hospital (NNUH).

At her eye clinic appointment, Mrs Weyman was asked if she had experienced back problems and whether she was interested in participating in research. 'Of course, I said yes,' said Mrs Weyman. 'A little seed of hope was planted in my mind that someone might finally be able to help and identify what had been going on all this time.'

Close links between the ophthalmology and rheumatology departments at NNUH meant that Mrs Weyman's symptoms were identified as being suggestive of axial spondyloarthritis (AS), a condition which causes severe spinal pain due to inflammation and structural damage.

Eastern Daily Press: Lloyd Chafer who took part in a trial at NNUH. Photo: NNUHLloyd Chafer who took part in a trial at NNUH. Photo: NNUH (Image: Archant)

She was sent for further tests which showed she was positive for the HLA-B27 gene - to which AS has a strong genetic link - and an MRI showed widespread inflammation of the spine.

In fact, Mrs Weyman was one of 17 patients from 73 referred via the study who were identified as having AS.

These patients had been suffering from back pain for an average duration of 20 years but none of them were aware they had AS.

An ongoing campaign, led by the National Ankylosing Spondylitis Society (NASS), called Back Pain Plus had also been running in parallel seeking to raise awareness of the combinations of symptoms which could be indicative of the condition.

This includes back pain with uveitis, as in Mrs Weyman's case, however there are also other campaigns highlighting back pain and its links with colitis and psoriasis.

After a 20 year search for an explanation for her back pain, Mrs Weyman was relieved to have found an answer.

She said: 'Just to know what's going on and why I've been feeling like this has helped enormously.

'It finally feels like we're on the road to positive progress.'

Dr Karl Gaffney, consultant rheumatologist at NNUH added: 'Carol's story is so typical of what we hear from patients – enduring years of pain, not being investigated appropriately, concerns about being believed, the delight at having an explanation for symptoms and being able to understand the condition. Early diagnosis is so important as there are very effective new treatments which work best in early disease.

'The benefits and importance of collaboration between different specialties within our hospital are also highlighted by Mrs Weyman's experience.'

Mrs Weyman has recently started a new biological treatment which is self-administered as a fortnightly injection.

She said: 'The new treatment has been working its magic and I feel better than I have done in years.

'The team at NNUH have changed my life for the better and I'm truly grateful to have benefited from their unrivalled expertise.'

'Mentally it gave me such a lift'

In late 2013, Lloyd Chafer, then 23, was experiencing severe back pain and was becoming increasingly lethargic.

Unlike many others, only six weeks after his first appointment to investigate the cause of his back pain, Lloyd's AS had been successfully diagnosed and he was prescribed a course of anti-inflammatory medication.

But by June 2014, despite being prescribed a course of anti-inflammatory medication, Mr Chafer's symptoms were worsening and simple tasks like getting out of bed and getting into the car had become challenging.

Mr Chafer was presented with an opportunity to participate in a clinical trial at NNUH. The trial was investigating a new treatment for AS which had not yet been licenced.

'You hear medical trial and you think about things going on in a laboratory,' said Mr Chafer. 'But once I'd discussed with the team what the trial actually involved and what would be expected of me, I realised that this might be a great opportunity to help myself feel better for the future and to potentially help others suffering from AS.'

Participation in the trial began in August that year and by that time Mr Chafer had the range of movement of a 65 year old.

'I was holding on to doorframes to help me walk from my bedroom to the shower,' he said. 'My foot had swollen and normal activities were difficult; it was only after 20 minutes in a hot shower that movement began to get easier.'

The trial involved a fortnightly injection into Mr Chafer's thigh which was administered at the hospital. Once he became familiar with the process, he was able to inject himself at home.

'Within six weeks, I was back to my old self,' said Mr Chafer. 'I realised I hadn't felt this good for at least 18 months and mentally it gave me such a lift.'

The trial lasted for a total of 18 months, throughout which Lloyd continued to respond extremely well to the treatment being tested. Although the medication had not yet been licensed or funded to be provided on the NHS, given his positive progress, the pharmaceutical company agreed to continue to supply Mr Chafer with the treatment. This treatment is now licenced.

He said: 'The work of Dr Gaffney and his team and their commitment to finding the best treatment for their patients is unparalleled. I can't sing their praises enough.'

Factfile: Axial Spondyloarthritis

Axial Spondyloarthritis (AS) affect around one in 200 people in the UK and usually begins in the late teens or early adulthood.

• Many patients also experience arthritis in other areas, typically the hips, knees and feet, and there is a strong genetic link with the HLA-B27 gene.

• It can be challenging to identify AS patients and the average time to diagnosis is around eight to ten years.

• Eye inflammation (anterior uveitis) affects up to 40pc of patients with AS.

• Other related symptoms can include tendon problems and inflammation of other organs including the bowels and skin.

Dr Karl Gaffney said: 'We are at the forefront of clinical research in collaboration with many national and international centres of excellence and have developed an extensive clinical trials programme which enables patients to have access to new therapies long before they come to market.'