Struggling with routine symptoms of a bad cold – including an irritating cough and headache – Jo Daniels thought nothing of reaching for a household cough medication she’d often used in the past.
‘I thought taking Benylin would help me get a better night’s sleep,’ recalls Jo, 49, who lives in Llanelli, Carmarthenshire, and has a son, Alexander, 28.
‘I’d used Benylin several times before and never thought anything about it.’
Yet that dose of the medication, in February 2018, would change her life – leaving her with lasting damage to her vision and her appearance and unable to work, after triggering a rare but serious reaction.
Within two days of taking the drug, Jo had developed sores and blisters in her mouth where layer upon layer of skin started peeling off. She even had ulcers around her eyes that made her look as if she was ‘weeping blood’, she says.
At the worst point, ‘I thought I was going to die,’ she recalls.
‘My eyes were weeping blood – like pictures I’ve seen of the Virgin Mary with blood coming from her eyes. I was wiping blood from my eyes with tissues – it was horrific.’
It transpired that Jo had developed Stevens-Johnson syndrome (SJS), a rare but serious skin reaction.
Within two days of taking Benylin, Jo developed sores and blisters in her mouth and had ulcers around her eyes
SJS is usually caused by medication – while many drugs can cause the reaction, the most common include penicillin, anti-seizure medications used for epilepsy and nerve pain (such as lamotrigine, carbamazepine and phenytoin) and certain sulphonamide antibiotics, such as sulfamethoxazole and sulfadiazine.
Non-steroidal anti-inflammatory drugs, such as ibuprofen, can also trigger it.
Doctors later told Jo that the ingredient in Benylin responsible for the reaction was paracetamol.
Dr Daniel Creamer, a consultant dermatologist at King’s College Hospital in London, says that in almost all cases, SJS is an allergic reaction to a medication. However, very occasionally, doctors cannot identify the culprit. ‘In these people a virus is thought to be responsible,’ he explains.
It is known as a febrile mucocutaneous drug reaction, meaning it affects the mucous membranes (or moist linings) found throughout the body’s internal passages, covering digestive, respiratory and genital organs – as well as sensory organs, such as the eyes.
It’s managed with dressings on the eyes and blistered areas, steroid medications (including steroid mouthwashes) and lubricants.
SJS is extremely rare, affecting only one to two people per million each year, but it can be very difficult to predict who will develop it.
As Dr Creamer explains: ‘They can have used the drug before, then suddenly develop an allergic reaction to it.’
He adds: ‘The first signs are a fever, sore mouth and gritty eyes – which classically are misdiagnosed by a GP or A&E doctors as a virus.
‘Then the blisters on the skin appear which can track down the airways, blistering the windpipe and causing respiratory failure.
‘About ten per cent of people who develop SJS will die – often because as the skin deteriorates, it falls off, leaving the patient prone to infections on the skin. Those infections can get into the bloodstream causing life-threatening sepsis.’
Jo realises she was very lucky that her condition was quickly picked up by doctors.
She woke the morning after taking the cough medicine with sores in her mouth, swollen eyes and cloudy vision.
‘I’d always been such a healthy person, I rarely caught bugs so this was a real shock,’ she says.
She had ulcers around her eyes that made it look like she was ‘weeping blood’
‘I’d always been such a healthy person, I rarely caught bugs so this was a real shock,’ she says
Jo Daniels before she became ill
Her GP initially thought the sores around her mouth and fever were signs of measles and advised Jo to drink plenty of fluids and rest.
But Jo’s symptoms rapidly worsened over the next five days – her mouth sores were so painful she couldn’t eat or swallow, and spread to inside and around her ears.
‘It was horrific and unlike anything I had ever heard of or seen before,’ she says – so her mother took her to A&E in Swansea.
‘Luckily, one of the doctors recognised that it was SJS – and sent me to the burns unit to be treated with intravenous antivirals, antihistamines and antibiotics,’ says Jo.
‘They had to act fast because the condition can be life-threatening and can cause the body’s organs to shut down. Luckily I hadn’t reached that point.’
Jo was given medication to try to prevent scarring on the retina of the eye (the light sensitive cells which detect light and convert it into signals to the brain), as well as steroids to reduce the inflammation and suppress her overactive immune response. She was sent home later that day with further antibiotics and antiviral medication.
But it would be three weeks before Jo’s ulcers began to heal.
She recalls: ‘I couldn’t do anything at all because I couldn’t see. It felt like I had severe burns across the whole of my mouth, nose and eyes.
‘I tried eating soup and jelly but it was too painful – I could only manage small sips of water. I lost about half a stone in weight.’
The steroids caused her skin to dry, leading it to flake badly.
‘Large chunks of skin were falling off on my lips and mouth,’ she recalls. ‘I found a big chunk of something in my mouth, and I realised it was the inside of my cheek falling off. It was horrible.
‘I was worried when I went to sleep that I would choke on my own chunks of flesh, so my mum monitored me for the few hours’ sleep I managed to get each night,’ she says.
Dr Creamer explains that skin can fall off in chunks, as happened to Jo, because the blistering caused by the syndrome can cause sections of skin to die.
He adds that the condition can also cause scarring and permanent damage to the delicate membranes of the eye, which can result in sight problems.
In the mouth, it interferes with saliva production, which in turn can lead to dental decay (by allowing bacteria and plaque to build up).
He says: ‘When the acute reaction calms down it leaves you with susceptibility to whichever drug caused it, which means you could get the same reaction again if exposed to the drug again, or the same virus.’
Eight years on, Jo’s eyes are permanently swollen and she has dental decay because the condition damaged her gums, causing them to recede.
She also has impaired vision due to the damage to her eyes: ‘I can’t see the TV screen as well as I used to, or read,’ she says.
‘I can’t put makeup on because I can’t see clearly enough to do this – and I am reluctant to go out because I have completely lost my self confidence. I used to be a very sociable person but I’ve been made an agoraphobic by this terrible condition.’
She’s been advised to avoid taking Benylin again and is consequently scared to ever take paracetamol.
Scientists at the University of Liverpool are currently researching to what extent SJS may be caused by genetic factors.
Nadier Lawson, founder of SJS Awareness UK, who suffered an attack of SJS herself 30 years ago, says: ‘There are no definite answers as yet as to why it happens on rare occasions in some people and not others.’
Jo woke the morning after taking the cough medicine with sores in her mouth, swollen eyes and cloudy vision
Eight years on, Jo has dental decay and permanently swollen eyes
She adds: ‘People can take a certain drug for years, and then suddenly develop an adverse reaction to it.’
She cites the 2010 case of a woman in Sweden who took developed Stevens-Johnson Syndrome after taking a paracetamol for a viral infection.
‘She could have been taking paracetamol for years when it suddenly did this to her,’ says Nadier Lawson.
As for Jo, she is now more prone to colds and infections than previously – and air conditioning in shops and supermarkets can cause her eyes to dry out easily, so she wears light sunglasses to protect her eyes.
She’s also had to give up swimming as the chemicals in the water irritate her eyes.
She now makes her own cough remedies with lemon, ginger, garlic, honey and water – ‘I wouldn’t dream of using an over-the-counter cough medicine again,’ she says – and tries to live as healthily as she can.
‘And I’m too self-conscious to leave the house because of the way I look,’ she says.
But she admits she is constantly afraid of another flare-up – not least because she knows of friends in internet SJS support groups who have died after suffering a return of the condition.
‘I fear another flare-up more than anything, and doctors can’t predict when and if that will ever happen,’ she says. ‘I try not to think about it, but it’s very scary.’
