LUPUS DRUGS ATTACK MOTHER AS HER SKIN SHEDS AND BLISTERS
Mother, 46, shed her skin ‘like a snake’ after extreme reaction to drugs she took to treat lupus
Mary suffers from lupus caused by problems with the body’s immune system
She was given the drug Quinoric to treat the condition but developed an agonising skin reaction
Doctors told her to say her final goodbyes to her children
PUBLISHED: 13:09, 27 August 2012 | UPDATED: 14:37, 27 August 2012
A mother who was prescribed drugs to combat a rare autoimmune condition made her shed her whole skin – like a human snake.
Mary Holder, 46, lost 98 per cent of her skin and almost died when her body burst into blisters and burns after she took medication to treat lupus.
Called Quinoric, it was recommended to the mother-of-two even though medics knew it could cause the painful skin condition Stevens-Johnson Syndrome (SJS).
Warning: Mary Holder lost 98 per cent of her surface skin after she took medication to treat lupus. She has campaigned to have the skin reaction added to the list of possible adverse side-effects
But even doctors were stunned by her violent reaction, which even made her eye balls peel, and all of her hair fall out.
She was rushed to hospital with third degree burns, which were so severe medics could only describe her as a “walking open wound”.
At its worst, Mary was placed in isolation and warned by doctors to say her final goodbyes to her family.
When she miraculously pulled through, her body had been so badly damaged she had to learn to walk again. But determined to stop anyone else suffering her agony, she launched a bid to force warnings to be added to all Quinoric packaging.
Now drugs chiefs have asked the pharmaceutical firm, which makes Quinoric, to add warnings to their packaging about the dangers of the excruciating snake skin illness, SJS.
Mary said she refused to give in even though all the liquid in her body dried up – leaving her no tears to cry.
She said: ‘It is the worst pain of my life, your body wants to die. But when you are told to get your family around you because this could be it, you find strength from somewhere.
‘It is hard to explain but I wasn’t going to die and I wasn’t going to let it beat me.
‘I refused to say goodbye to my family and my husband stayed by my bed every minute of the day.
‘It was exceptionally difficult for my family to cope with, my daughter was so traumatised by the sight of me she only visited me once, she thought she would never see me again.
‘I nearly went blind, my hair fell out by the hand-full and was covered in three degree burns, I thought I would never feel well again. I felt like I had been scorched and set fire too.
‘The consultant who prescribed the drug to me was shocked to see my condition. He told me, ‘Well Mary, you look like you have been dropped in a bath of acid’.’
Mary, of Chichester, Sussex, was diagnosed with lupus in January 2011 – a condition where the immune system starts to attack healthy cells, tissue and organs.
She was prescribed Quinoric by medics to help treat it, but after taking just four tablets her lips became swollen and she suffered shortness of breath.
Mary scanned the medical advice leaflet and stopped taking the medication when a painful rash began to develop on her body.
She made constant visits to her GP, who prescribed steroids, and applied dressings to the blisters and sent her home.
But by the time a doctor finally diagnosed her with Stevens-Johnson syndrome Mary was in constant agony and could barely walk.
Her husband of 27 years, forest manager Michael, 48, rushed her to St Richards hospital, Chichester, where she was placed in isolation room to help combat the infection.
By February 1, 2011, she had shed all but two per cent of her skin and she was advised to say her final goodbyes to her children Leanne, 18, and Christopher, 23.
Incredibly, after a week in intensive care Mary pulled through, but is still battling to recover from the lasting effects of the illness.
Following the illness, Mary launched 15 month battle for warnings about the dangers of SJS be included on the drugs packing and in the accompanying user information.
The Medicines and Healthcare products Regulatory Agency (MRHA) has now asked Quinoric manufacturer, Bristol Laboratories, to create a new leaflet highlighting the risk of side affects with their drug.
Mary added: ‘I look at my body and it does get me down, the scaring on my legs is horrific. I am lucky to be alive but my body will never been the same again.
‘We are having to move as I can am no longer financially able to help support the family and I just feel like because of me my family is being broken up, prodded and poked.
‘My illness put all of them through so much I wouldn’t wish that on my worst enemy.’
A spokesperson for MRHA said: ‘We are sorry to hear that Ms Holder has suffered serious side-effects from her medication.
‘Stevens-Johnson Syndrome (SJS) is a very rare side-effect and the patient information leaflet for Quinoric includes an easy to understand description of the symptoms of SJS rather than just referring to SJS which most people would find difficult to understand.’
Bristol Laboratories said it had included all the information on the medication leaflet as required by law. The company added it would not comment on an individual’s case.
However, a spokesman said: ‘Patient information leaflets are intended to be written in an easy to understand style for people so that they supplement the discussions that take place between the patient and their doctor.
‘As a UK-based pharmaceutical company, Bristol Laboratories Ltd is required to provide in the patient information leaflets included in the packages of drugs that it distributes only and exactly the precise wording that is prescribed by the Medical Health Regulation Agency.
‘Bristol Laboratories Ltd is a responsible and ethical company which complies with its regulations in respect of patient information and works closely with the Medical Health Regulation Agency to ensure that patients are well informed of all possible side-effects.
‘The legal responsibility for the patient information leaflet lies with Bristol Laboratories as they are the marketing authorisation holder.’