Millions of people in the UK have a penicillin allergy label in their medical records and I am one of them. This means that the most effective treatment is not available for a wide range of bacterial infections.
You might think that this is not important and that many alternative antibiotics are equally effective. But you would be wrong: antibiotics from the penicillin family are not only often still the most valuable option, but they are less likely to cause side effects than the alternatives. So you don’t want to rule them out unless you have a serious allergy.
However, nine in ten people (about four million of us) who think they are allergic to penicillin are not, according to the charity Antibiotic Research UK.
In fact, this 90 percent of us with a penicillin “allergy” will actually have arisen from a reaction we had in childhood, or will have had a reaction to penicillin specifically related to having glandular fever (as in my case), or you will have mistaken an unrelated side effect or symptom for an allergy.
Josa Keyes had a reaction to penicillin after having glandular fever
In fact, penicillin allergy is often self-diagnosed by people who have had symptoms, such as diarrhea, vomiting, nausea, headache, or bloating, while being treated with the medication. This “allergy” is then added to your medical notes without additional testing or questions. And it usually stays there.
The Royal Pharmaceutical Society reports that simply being labeled as allergic to penicillin is associated with a higher mortality rate of six additional deaths per 1,000 patients in the year following treatment of the infection, as the drug saves lives that other medications cannot.
The problem is: how can we ensure that those who are genuinely allergic keep the warning in their medical notes and remove it from those who are not?
Across the population, this ‘de-labelling’ has the potential to reduce unnecessarily long hospital stays and hospital-acquired infections, saving the NHS money.
When Alexander Fleming, professor of bacteriology at the University of London, went on holiday in 1928, he had no idea what world-changing event would occur in his laboratory at St Mary’s Hospital, Paddington.
Back at work on September 3, he took a look at a moldy Petri dish where he had been growing Staphylococcus bacteria and noticed an unusual light margin around the fluffy green spot.
By chance, scientists in the same lab were studying the effects of mold on the lungs, and a rare strain of Penicilliumnotatum (a fungus) had been transferred to Fleming’s dish, where it was destroying the bacteria causing the infection as quickly as possible. that could
Fleming’s findings earned him the Nobel Prize in 1945, when new penicillins, with their ability to treat previously fatal bacterial infections such as respiratory infections, syphilis, and gonorrhea, became widely available.
The penicillin family remains the best treatment for many bacterial infections, although different antibiotic compounds have since been developed.
I was 17 when I developed a chronic sore throat after visiting my 13-year-old cousin, who was bedridden with glandular fever.
Our GP diagnosed me with tonsillitis and prescribed amoxicillin (a form of penicillin) repeatedly. I didn’t get better so he gave me more.
Still feeling unwell, I went to stay with a friend in Norfolk, and the first morning I woke up covered from head to toe in itchy red bumps. My friend’s mother, a family doctor, examined me and had me do tests. Glandular fever.
Back home, I went straight to bed and woke up very white and swollen, covered in small purple bruises. No one seemed to care about this (it was the 70s) and I slowly recovered.
Only recently have I understood what happened.
The National Institute for Health and Care Excellence reports: ‘Maculopapular rashes (small red spots that coalesce into patches, which may resemble hives, an allergy symptom) occur commonly with ampicillin and amoxicillin, but usually not They are related to a true allergy to penicillin. They almost always occur in patients with glandular fever. Therefore, broad-spectrum penicillins should not be used for “blind” (without testing for bacterial infection) treatment of sore throat.’
Your GP can contact Imperial’s tag removal clinic if you believe your records are incorrect.
In other words, the rash I suffered was not a symptom of a penicillin allergy, but rather a reaction to the medication related to the glandular fever virus.
There were no further antibiotic-related events in my life until 1992, when, six months pregnant with my second child, I developed a urinary tract infection. Since this can cause premature labor, they gave me an antibiotic; I’m not even sure which one.
Within hours, I was covered in itchy red spots that gathered together, particularly uncomfortable on my belly. That was it. I thought I was allergic and they put the label on me.
It didn’t matter that the doctors hadn’t said so. He was convinced and determined never to take penicillin again.
I am now 60 years old and I want to be able to access the best possible treatment if necessary. So I need to have the penicillin allergy label removed if it is not appropriate.
In 2022, in an effort to accelerate this vital de-labelling, the British Society of Allergy and Clinical Immunology set out its guidelines for penicillin allergy de-labeling services for non-allergic people working in hospitals.
Ideally, GPs would refer patients to a label removal clinic as they become available, but the UK has the lowest number of allergists per capita in the developed world, hence the need to use non-specialists says Dr Sophie Farooque, consultant allergist at Imperial College Healthcare NHS Trust in London.
She and her colleagues have recently created one of the first clinics of its kind. So far, the number of people who have had the label removed is small, but the future potential is huge. The clinic uses a two-tier approach. First, the pharmacy team works through a checklist, which includes the patient’s medical records.
For example, they may have been prescribed amoxicillin (without knowing it was in the penicillin family) and not experienced any problems.
Other questions will focus on the symptoms that led to the initial labeling, such as nausea, type of rash, stomach pain, headache, or a strange taste.
If the patient is considered to be at low or no risk, they will be given a dose and observed.
Patients with concerns are referred to Dr Farooque’s clinic for further investigations, including skin tests where small amounts of penicillin are injected under the skin to assess the reaction. The clinic is located in a day room, ensuring quick treatment if a patient has an allergic reaction.
This will not be a quick fix for the millions of people wrongly labeled as allergic to penicillin, although there are future plans for a national allergy strategy, says Dr Farooque.
Meanwhile, if you have a penicillin allergy label in your notes that you think may be inaccurate, you can ask your GP to contact Imperial’s label removal clinic, advises specialist Dr Tom Swaine in infectious diseases from Imperial.
I will ask my GP to refer me as soon as the clinic is fully operational, in case I ever develop the type of infection for which the penicillin family is the best treatment.