By Jerome Burne
Published: 23:50 GMT, 22 April 2013 | Updated: 06:41 GMT, 23 April 2013
Several years ago, Anne-Marie Cook, a 40-year-old health care assistant from Surrey, was prescribed the antidepressant Seroxat after she’d become anxious and withdrawn following the death of her father.
Within a few months she began to feel better and started going out with friends again. Sensibly, she checked the drug information leaflet to make sure it was all right to have alcohol while on the medication. ‘There is no known interaction between Seroxat and alcohol,’ it read.
But this isn’t the whole story, as Anne-Marie learned to her cost. In rare cases, there is an interaction. She had no idea of it at the time, but with hindsight it explains her changed behaviour.
‘After just a couple of drinks I started to become verbally aggressive and reckless,’ says Anne-Marie (not her real name). ‘Once I started drinking I found it hard to stop. I also found I was becoming confused after drinking alcohol.
‘I got banned from restaurants and bars in my local town and became an embarrassment to my friends. Once I climbed onto my roof. I was not trying to kill myself. I felt as if I was in a dream.’
For over a year her drinking worsened and she was even arrested several times. She lost her job and her home, but couldn’t stop herself. ‘I knew something was wrong; my craving for alcohol was so intense I felt possessed, but couldn’t understand why.’
She searched the internet for clues and, to her astonishment, found she was far from alone. Seroxat is one of a group of antidepressant drugs known as SSRIs, or selective serotonin reuptake inhibitors.
As Anne-Marie explains: ‘There were lots of other people reporting the same desperate craving for alcohol on SSRI medication. Yet no one in the medical profession seemed to be taking notice of it.
‘I had tried telling my GP and doctors I saw in rehab that I thought the drug was the cause, but they accused me of being in denial about my alcoholism.
‘The Patient Information Leaflet (PIL) didn’t mention it because it is a fairly rare side-effect.’
Anne-Marie’s story and how she eventually discovered a link between the drug and her craving, is told on rxisk.org, a new website designed to collect information about uncommon side-effects of drugs, in order to help patients get their concerns taken seriously by their doctor.
Since it was set up last autumn, the website has collected a number of reports about another rare SSRI side-effect — severe hair loss.
It may sound superficial, but it can have devastating consequences, particularly for women.
Unusual adverse reactions such as these will not appear in a drug’s patient leaflet because they have not shown up in a clinical trial. This is because clinical trials don’t study enough people to pick up uncommon effects, says psychiatrist Tim Kendall, a visiting professor at University College London.
‘Drug trials are not a good way of picking up uncommon side-effects because the drugs are tested only on a few thousand people and then prescribed to millions.’ But unreported uncommon side-effects are just part of a bigger problem.
The website also acts as a forum for patients to discuss any problems they are having with drugs, such as hair loss.
RxISK is the brainchild of a leading psychiatrist, Dr David Healy of University of Wales, Bangor. Author of over 100 scientific papers, he is a long-time campaigner for greater transparency about adverse effects of drugs.
‘Drug companies and the drug regulator have never been proactive about uncovering evidence of risks from drugs,’ he says…