For years Cath Ross’s health, career, virtually her entire life, were dominated by her constantly blocked nose.

At times it was so bad that Cath, 59, a civil servant says: ‘I struggled to breathe’ – and she was often sleep-deprived as a result.

The only way she could drop off was with her mouth open, ‘which made me snore, disturbing my husband’, she says.

And if her mouth closed, ‘I would often wake up with a start because I couldn’t breathe,’ adds Cath, who has two adult sons and lives with husband Peter, 63, a chief finance officer, in Lowestoft, Suffolk.

‘I was constantly tired at work because my sleep was so interrupted.’

Cath has chronic rhinosinusitis with nasal polyps (CRSwNP), a surprisingly common long-term inflammatory disease that leads to persistent swelling in the lining of the sinuses, nasal passage and nasal cavity.

In Cath’s case, her sinuses – the air-filled cavities around the nose behind the cheekbones and forehead – were so blocked that air could only escape through a small gap, sometimes resulting in a whistling sound.

This could occur at any time – and struck during work meetings, ‘so often I felt humiliated’, says Cath.

‘It sounded like someone trying to whistle through their mouth but not very well.’

Her sinus problem also robbed her of her sense of taste and smell.

Cath, who has chronic rhinosinusitis with nasal polyps (CRSwNP), says: ‘I was constantly tired at work because my sleep was so interrupted'

‘I couldn’t taste even strong flavours such as garlic or a spicy curry,’ says Cath. ‘It took away the pleasure of eating and made my life a misery.’

Steroid sprays from the doctor did nothing to help – even surgery brought only temporary relief.

It is only now after 20 years of debilitating symptoms that Cath is finding relief thanks to a new drug that has just been approved for use on the NHS.

And many others are set to benefit, too. CRSwNP is one of the main reasons people lose their sense of smell, but doctors say it is underdiagnosed as many people mistake its symptoms for other conditions, such as signs of an allergy or colds.

And as the symptoms may progress slowly, people don’t notice the impact at first.

About 30 per cent of people with chronic rhinosinusitis – swelling of the nasal lining lasting 12 weeks or more – develop soft, painless non-cancerous growths (called nasal polyps), forming firstly in the sinuses before stretching into the nasal cavity.

These are diagnosed, as in Cath’s case, by an endoscopy (where a camera on a thin tube is used to examine the nasal area).

According to the charity SmellTaste, chronic rhinosinusitis affects around 11 per cent of the population – roughly 5.5 million people – and more than 25 per cent of those have CRSwNP.

A drug called dupilumab is giving fresh hope to patients suffering with severe CRSwNP who have not responded to other treatments

‘Having this condition is effectively like having a bad cold, feeling bunged up but without feeling unwell, so is very debilitating,’ says Matthew Trotter, a consultant ear, nose and throat surgeon at University Hospitals Coventry and Warwickshire NHS Trust and Spire Parkway Hospital, Solihull.

‘It’s unclear what causes it – and why some chronic rhinosinusitis patients develop nasal polyps while others don’t.’

He adds: ‘Often it causes pain in the face and forehead, where the four pairs of sinuses are located. The pain is from a large volume of polyps, which can grow to the size of a large grape.

‘Other common symptoms are nasal congestion or a runny nose leading to nasal secretions [mucus, water and dead cells] dripping down the back of the throat.’

Less common symptoms include itching around the eyes.

Mr Trotter says: ‘The first line treatment is steroid nasal sprays to shrink the polyps. Sometimes, we might prescribe a short course of high dose steroid tablets [which can better reach polyps deep in the sinus and nasal cavities] and then a spray to manage it afterwards.

‘If this doesn’t help, the patient will have the nasal polyps surgically removed under a general anaesthetic.’

The decision about whether to operate or not is reached after completing a questionnaire – known as SNOT 22 (Sino Nasal Outcome Test) – and it becomes clear the patient’s life is being affected by the volume of nasal polyps.

Mr Trotter says during surgery the aim is not to remove all the polyps, as the delicate sinus lining could become damaged, but enough to improve breathing.

‘We can’t guarantee this surgery can always bring back smell,’ he adds. ‘But many patients are amazed that they can breathe normally again. It can make such a difference to their everyday life.’

Cath underwent surgery in 2007 but her symptoms returned within 12 months.

Nasal polyps can grow back – often because underlying inflammation has not been controlled.

According to a Dutch study published in 2022 in Respiratory Medicine, nearly half of patients experience symptoms again within a year of surgery.

Now a drug called dupilumab is giving fresh hope to patients suffering with severe chronic rhinosinusitis with nasal polyps who, like Cath, have not responded to other treatments.

The National Institute for Health and Care Excellence (NICE) approved its use in February.

Warwickshire-based ear, nose and throat surgeon Matthew Trotter says: ‘Having this condition is effectively like having a bad cold, feeling bunged up but without feeling unwell'

To be eligible for the drug, patients must have had the condition for at least 12 weeks, not responded to steroids and had at least one surgery or be able to show that their condition is having a severe impact on their lives.

Dupilumab belongs to a class of drugs known as monoclonal antibodies, says Carl Philpott, a professor of rhinology and olfactology at the University of East Anglia, who also runs a smell and taste clinic at the James Paget University Hospital in Great Yarmouth, Norfolk.

‘They work by blocking cytokines, proteins released by our cells that trigger inflammation in the body.

‘In the case of dupilumab, it blocks a particular subgroup of cytokines called interleukin 4 and interleukin 13 from recruiting inflammatory cells which cause swelling and ultimately the formation of polyps.’

Steroids also do this but can cause significant side-effects, such as high blood pressure and diabetes. Monoclonal antibody drugs do not, though dupilumab – which is administered by patients once a fortnight using an injector pen – can cause muscle ache or dry, itching eyes.

Dupilumab, which is already used to treat some asthma and eczema patients, was approved for CRSwNP patients following two clinical trials – one of which Cath participated in during 2017 but, she believes, was assigned to the placebo arm – which showed it significantly improved symptoms.

Cath says: ‘At that point my symptoms were getting worse. I didn’t go out to eat much as it seemed pretty pointless.

‘And as I couldn’t breathe through my nose, I had to eat with my mouth open, which was something I didn’t want to do in public.’

However, in 2022 – by which time she had taken part in a second trial and had more unsuccessful surgery – Cath was granted access to dupilumab by the drug’s manufacturer, Sanofi.

It funded the treatment (it costs around £1,200 per month, compared to £3,000 for sinus surgery) as she had failed to respond to all other therapies.

Cath says: ‘Two weeks after starting on dupilumab, my smell and taste came back. The first time I realised that was when I was filling up my car and the smell of the petrol was very powerful.

‘The injections are very effective. I know when I’m due another one as I will feel a bit bunged up in the morning. But within 24 hours after the injection, the congestion will have disappeared again.’

Sanofi continues to fund it for her.

Professor Philpott says: ‘New drugs are coming along all the time – so in the next ten years, there will probably be even more options available for patients.

‘For example, tezepelumab is now licensed to be used for CRSwNP but not yet approved by NICE.

‘When others become available, their cost should reduce and they will be more readily available on the NHS. They will certainly make life easier for patients who have run out of other therapy options.’

Mr Trotter agrees, saying: ‘All the evidence so far suggests that in the right patient – in other words, those with all the typical symptoms such as a constant congested nose – dupilumab is a superb adjunct to those who may have had lots of nasal surgery in the past because their polyps grow back.

‘We believe we’ve now got something that will actually modify this disease to stop symptoms and multiple surgeries.’

Cath adds: ‘Since being on this drug, I’ve got my life back. I’m more social again and enjoy holidays. It’s also a huge relief that my nose no longer makes a whistling sound.

‘It’s only when you lose your sense of smell you realise how much you miss out on.

‘I now love the smell of candles and flowers, perfumes and aftershave. I still marvel at the smell of freshly cut grass or nature because, at the peak of my nasal issues, it felt very bleak and something I would always have to live with. But that has all changed now – which is amazing.’

smelltaste.org.uk