For years, almost her entire life, Cath Ross’ health and career were dominated by her perpetually stuffy 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 get off was with her mouth open, “which caused me to snore and disturb my husband,” she says.
And when her mouth closed, “I would often wake up because I couldn’t breathe,” adds Cath, who has two adult sons and lives with husband Peter, a 63-year-old finance director, in Lowestoft, Suffolk.
‘I was constantly tired at work because my sleep was so disturbed.’
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 cavity, 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 hole, sometimes resulting in a whistling sound.
This could happen at any time – and struck during work meetings, ‘I felt humiliated so often,’ says Cath.
“It sounded like someone was trying to whistle through his 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 even taste strong flavors like garlic or a spicy curry,’ says Cath. ‘It took the pleasure out of eating and made my life a misery.’
Steroid sprays from the doctor did nothing – even surgery brought only temporary relief.
It is only now, after twenty years of debilitating symptoms, that Cath finds relief thanks to a new drug that has just been approved for use by the NHS.
And many others will benefit from it too. CRSwNP is one of the top reasons people lose their sense of smell, but doctors say it is underdiagnosed because many people confuse its symptoms with other conditions, such as signs of an allergy or a cold.
And because symptoms can worsen slowly, people don’t notice the impact at first.
About 30 percent of people with chronic rhinosinusitis—swelling of the nasal lining that lasts twelve weeks or more—develop soft, painless, noncancerous growths (called nasal polyps), which first form in the sinuses before extending into the nasal cavity.
These, as in Cath’s case, are diagnosed by 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 percent of the population – roughly 5.5 million people – and more than 25 percent of them have CRSwNP.
A drug called dupilumab is giving new hope to patients suffering from severe CRSwNP who have not responded to other treatments
‘Having this condition is essentially like having a bad cold, where you feel cramped without feeling unwell, so it is very debilitating,’ says Matthew Trotter, an ear, nose and throat surgeon at University Hospitals Coventry and Warwickshire NHS Trust and Spire Parkway Hospital, Solihull.
‘It is unclear what causes it – and why some patients with chronic rhinosinusitis develop nasal polyps while others do not.’
He adds: ‘It often causes pain in the face and forehead, where the four pairs of sinuses are located. The pain comes from a large number of polyps, which can grow to the size of a large grape.
‘Other common symptoms include a stuffy nose or a runny nose leading to nasal discharge [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 nasal steroid sprays to shrink the polyps. Sometimes we can 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 keep it under control afterwards.
‘If this does not help, the patient will have the nasal polyps surgically removed under general anaesthetic.’
The decision to operate or not is made after completing a questionnaire – known as SNOT 22 (Sino Nasal Outcome Test) – and it becomes clear that the patient’s life is affected by the volume of nasal polyps.
Mr Trotter says the aim of the operation is not to remove all the polyps, as the delicate sinus lining could be damaged, but enough to improve breathing.
“We cannot guarantee that this operation will always bring back the odor,” he adds. ‘But many patients are surprised that they can breathe normally again. It can make such a difference in their daily lives.”
Cath underwent surgery in 2007, but her symptoms returned within 12 months.
Nasal polyps can grow back – often because the underlying inflammation is not controlled.
According to a Dutch study published in Respiratory Medicine in 2022, almost half of patients experience complaints again within a year after surgery.
Now a drug called dupilumab is giving new hope to patients suffering from 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 essentially like having a bad cold, where you feel cramped but not unwell.’
To qualify for the drug, patients must have had the condition for at least 12 weeks, have not responded to steroids and undergone at least one operation, or can demonstrate that their condition is having a serious impact on their lives.
Dupilumab belongs to a class of drugs known as monoclonal antibodies, says Carl Philpott, professor of rhinology and olfactory science 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 cause inflammation in the body.
‘In the case of dupilumab, it blocks a certain subset of cytokines, called interleukin 4 and interleukin 13, from attracting inflammatory cells that cause swelling and ultimately the formation of polyps.’
Steroids do this too, but can cause significant side effects, such as high blood pressure and diabetes. Monoclonal antibody drugs do not do this, although dupilumab – which is given to patients with an injection pen once every two weeks – can cause muscle pain or dry, itchy eyes.
Dupilumab, which is already used to treat certain asthma and eczema patients, was approved for CRSwNP patients after two clinical trials – which Cath took part in in 2017, but which she said was allocated to the placebo arm – showed it significantly improved symptoms.
Cath says: ‘At that moment my complaints became increasingly worse. I didn’t eat out much because it seemed pretty pointless.
‘And because I couldn’t breathe through my nose, I had to eat with my mouth open, something I didn’t want to do in public.’
However, in 2022 – having entered a second trial and undergone more failed surgeries – Cath was given access to dupilumab from the drug’s manufacturer, Sanofi.
It funded the treatment (it costs around £1,200 a month, compared to £3,000 for sinus surgery) because she had not responded to all other therapies.
Cath says: ‘Two weeks after I started dupilumab, my smell and taste returned. The first time I realized this was when I was filling up my car and the smell of gasoline was very strong.
‘The injections are very effective. I know when to get another one because I will feel a little bloated in the morning. But within 24 hours after the injection, the blockage disappears again.’
Sanofi continues to finance it for her.
Professor Philpott says: ‘New medicines are being introduced all the time – so over the next decade there are likely to be even more options available to patients.
‘For example, tezepelumab is now licensed for use in CRSwNP, but has not yet been approved by NICE.
‘As others become available their costs should fall and they will be more easily 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 to date suggests that in the right patient – in other words, those with all the typical symptoms such as a persistent nasal congestion – dupilumab is an excellent tool for those who may have had a lot of nasal surgery in the past because their polyps are growing back.
“We believe we now have something that will actually change this disease to stop the symptoms and multiple surgeries.”
Cath adds: ‘Since taking this medicine I have got my life back. I am 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 that you realize how much you’re missing 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 height of my nasal problems, it felt very gloomy and something I would always have to live with. But that’s all changed now – and that’s amazing.”
scenttaste.org.uk
