Families and campaigners of Brits affected by a severe and deadly side effect of a popular Spanish painkiller have renewed calls for it to be banned, after HuffPost UK spoke to a campaigner who claims it is still easily available to buy.
We previously reported how the painkiller metamizole, commonly known in Spain under the brand name Nolotil, had been associated with numerous deaths and severe reactions in British people who had taken it.
Nolotil has a known adverse side effect called agranulocytosis, which affects a small percentage of people and causes a rapid drop in white blood cells and sepsis (blood poisoning).
Although there are no conclusive studies, many health specialists suspect people from Northern Europe including those of British origin are more at risk to metamizole than people from Spain.
Following a number of cases of deaths and life-changing conditions in those who had taken Nolotil and other brands of the metamizole painkiller, Spain’s Agency of Medicines and Medical Devices issued new guidelines reminding healthcare professionals that metamizole is a prescription drug.
The updated recommendations issued on October 30, 2018 stated that metamizole should only be used for short periods and that patients taking it should be monitored and have blood tests.
The new information also says that the drug should not be used in patients where these controls are not possible – such as tourists visiting Spain who obtain it from a pharmacy or are admitted to hospital.
The warning says that before metamizole is prescribed, there should be a detailed look at the patient’s medical history and its use should be avoided in those with risk factors.
However, a campaigner whose investigations and collation of cases prompted the new guidelines, has told HuffPost UK that she has proof that pharmacies are not abiding by the updated recommendations.
Cristina Garcia del Campo, a medical and legal translator in Spain, began investigating Nolotil in December 2017 after noticing a high number of cases of sepsis among British people she was acting as translator for.
Although she welcomed the fresh guidance, she believed that it wasn’t being taken seriously enough by pharmacists and doctors and decided to conduct her own experiment by attempting to buy Nolotil from Spanish pharmacies.
Garcia del Campo told HuffPost UK: “I went into a chemist and asked for a box of Nolotil. I was asked if I wanted capsules or ampoules and I replied: ‘capsules’ and I was given a box, asked for €2.60 and I paid and went.
“It was as easy as that and I managed to buy them in less than a minute. I bought them without prescription and I wasn’t asked any questions.”
Over one weekend, Garcia del Campo says she went around half a dozen different pharmacies in Spain to ask for all the different versions of Nolotil. She claims she managed to buy six different boxes of metamizole medication from six different Spanish pharmacies.
“I bought all of them with no questions asked,” she said. “I bought them without a prescription even though it is only supposed to be a prescription drug.
“So it just shows that people are not taking notice of the new guidelines.
“This is why I am now fighting for Nolotil and related medicines to be completely banned before any other people suffer or lose their lives.”
Garcia del Campo told HuffPost UK how she has now collated more than 200 cases of British people who she says have been severely affected by Nolotil, including more than 20 deaths linked to patients who had taken the painkiller.
Nolotil or painkillers containing metamizole are not available in the UK and it is banned in many countries including the US due to its potential for adverse effects. Approval was withdrawn in the US in 1977. However, the painkiller remains widely prescribed in Spain and data shows its use has doubled in the last 10 years.
HuffPost UK told the stories of families originally from the UK but now living in Spain who have lost a loved one who took Nolotil, as well as those who came close to death after suffering the adverse side effect.
These included the tales of a 73-year-old from Bradford who bought the drug as pain relief following an operation and suffered the severe reaction which caused sepsis. He died in hospital a few weeks later.
One man, originally from Surrey, told how he took metamizole after a shoulder operation and ended up suffering septic shock and being put into an induced coma for six weeks on a life support machine.
And another victim, who is from Scotland but has been living in Spain for 42 years described how she was prescribed Nolotil as pain relief for a severe urinary infection and it wiped out her white blood cells to such an extent, doctors initially thought she had leukaemia.
Her condition deteriorated and she ended up developing gangrene which led to her having most of her feet amputated as well as some of her fingers.
Since HuffPost UK told the story about affected families calling for a ban of the controversial painkiller, more people have come forward to share their experiences and tell why they would like to see it taken off the market in Spain.
Billy Smyth, 66, was originally from Ireland but took early retirement and went to live in Torrevieja, Spain.
He was prescribed Nolotil for a sore shoulder and took it for about five days.
His son Derek Smyth, who lives in Australia, told HuffPost UK: “I was talking to my dad on the phone soon afterwards and he seemed like he had a really bad cold or flu which he just couldn’t shake off.
“He told me he was going to go to the doctor about it. This in itself was unusual as he never complained about being unwell.
“The doctor took some blood and noticed his white blood count was very low. The next thing we heard, he was in an ambulance being taken to hospital.”
Smyth developed sepsis and had to have radical surgery to remove the affected tissue to try and save his life.
However, the dad-of-two and grandfather of four fell into a coma and developed multiple organ failure and died days later on April 17, 2016.
His son Smyth said: “When doctors found out my dad had taken Nolotil, they realised he had suffered the known side effect which stops the body producing white blood cells which fight infection.
“This side effect seems to particularly be a problem for people of British and Irish descent.”
He added: “My dad was a very healthy and active man. The month before, he had been with me in Australia and we had been hiking and swimming and travelling all over.
“It is really hard to accept that something as simple and mundane as a painkiller took him.
“We want to see Noloti taken off the market as we don’t want anyone else to get hurt by it.
“It needs to be banned as while it is still available, the temptation will be there to prescribe it.”
Jackie Lapper, 75, who is from Stoke-on-Trent and moved to Spain 12 years ago with husband Graham, was prescribed Nolotil for pain relief after surgery on her shoulder.
Within weeks, her health deteriorated and her husband took her to hospital after she developed a fever. Doctors discovered her white blood cell count was virtually non existent and diagnosed her with having suffered a reaction to Nolotil.
Lapper told HuffPost UK: “I was put in hospital and into high dependency and my husband was told to stay with me as things were so serious.
“The Nolotil had affected my bone marrow causing agranulocytosis which affects the white blood cells.
“I was diagnosed with sepsis and was in hospital for seven days literally fighting for my life. I went through living hell.
“I count myself as lucky as I have mainly recovered. But I have ongoing problems with blood count and visual damage to my lower leg.
“I just want to see Nolotil banned for everyone.”
Lee Abbott, 53, moved to Spain 17 years ago from Kendal in Cumbria with his wife Karen.
The self employed electrician had suffered from a bad back from many years and when a disc ruptured, he was prescribed Nolotil for pain relief.
He said: “I took it for four to five days and then I came home from work feeling dizzy and sick and started losing sensations in my hands.
“I went to hospital the next morning as I had chest pains and couldn’t breathe properly.
“The Nolotil had killed off my white blood cells and I got pneumonia and septic shock.
“Doctors told my wife to get our children and they thought I was going to die. They warned that I only had a 30 per cent chance of surviving.”
Abbott was put into an induced coma for six days as his body was shutting down. He began to respond to the treatment and survived.
However, he says the experience has changed his life. “I still have nightmares about it now.” he told HuffPost UK. “I wake up sweating and dreaming about being in hospital and screaming in agony.
“Nolotil and all the other names it goes under should be completely banned. It is doing so much harm and people have died.
“There are so many alternatives that are safer so it should be banned.”
A spokesman from the Spanish Health Ministry told HuffPost UK that last year, following reports of cases of agranulocytosis, new recommendations were issued to healthcare professionals.
The spokesman said: “The Spanish Agency for Medicines and Medical Devices (AEMPS) issued a a communication in this respect, reminding as well to healthcare professionals that these medicines are under prescription. These medicines are under close follow-up.”
Boehringer Ingelheim, the manufacturer of Nolotil, gave this statement to HuffPost UK:
“Metamizole is a prescription drug indicated for the treatment of moderate to severe pain and fever and has been used in this indication since the 1950s.
“Metamizole is available under different brand names by different pharmaceutical suppliers across Europe and internationally.
“As with all medications there are known risks associated with use. These possible adverse drug reactions have been well described in the more than 60 years of experience with drugs containing metamizole.
“Boehringer Ingelheim sees the wellbeing and safety of patients as the highest priority and takes any report of adverse drug reactions very seriously.
“We put all measures in place to detect and report any adverse drug reaction to the national competent authorities. The final decision about the risk/benefit ratio remains with these authorities.
“In our interaction with the AEMPS in Spain, Boehringer Ingelheim have shared and continue to do so on an ongoing basis, all available data on the use of Metamizole (Nolotil) and the agency has recently published, in November 2018, its guidance based on the available scientific data and its own assessment .
“We are fully aligned with the November 2018 recommendations of the AEMPS which is reflected in the latest versions of the Summary of Product Characteristics (detailed information for Healthcare Professionals) and for patients (in the Patient Information Leaflet) of Nolotil that has been approved by the AEMPS.”
This article originally appeared on HuffPost.