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Easing my medication concerns: My journey to being actively involved in the safe use of medication for my osteoporosis

Karen Whitehead is a member of the Falls and Fragility Fracture Audit Programme (FFFAP) Patient and Carer Panel. The panel is essential to ensuring that patients and carers’ perspectives are incorporated into everything FFFAP does – from data collection through to how information is communicated about patient care and what patients should expect.

Today osteoporosis patients like me are swamped with information. Information is everywhere, all over the internet. You can just type ‘osteoporosis’ and whatever query you want into Google and it comes up with numerous websites and a huge range of information. There are also numerous Facebook groups dedicated to the condition. This leads me on to the query – which information to trust and believe?

As a former scientific research librarian, I have always trusted and believed information that is apparently supported by research and tried to find research papers. But an encounter with the rheumatologist I see, at a hospital Fracture Liaison Service, led me to question my previous beliefs.

It was my annual appointment and they were doing their annual review of all the various medications I was taking. I had been asked to always check first before taking any new supplements or over-the-counter medications and I had been waiting to ask them about taking vitamin K2 and magnesium as supplements; on all the various osteoporosis Facebook groups I was a member of, these supplements were being talked about, and many osteoporosis patients seemed to be taking them daily, insisting they were required, along with calcium and vitamin D supplements.

When I asked my specialist, they just laughed and asked me back ‘What supplements have I asked you to take, to support the bone medication you are on?’ I replied, ‘Calcium and vitamin D.’ ‘Right – did I ask you to also take vitamin K and magnesium?’ ‘No, but all the Facebook groups are recommending this and I’ve searched online and there seem to be a lot of research papers with positive results.’

At this point, my specialist gave a huge sigh and explained in great detail that the current research on vitamin K and magnesium supplements, much of it based on studies in Japan, was of poor quality and it was still unknown if these supplements would help osteoporosis patients or were good for their bones. I persisted, ‘But would it do any harm? Should I take them anyway? What do you think?’

Again, a great big specialist sigh. ‘Karen, I am only asking you to take calcium and vitamin D supplements. But if you want to take vitamin K and magnesium, it won’t do any harm. There is probably a slight chance they might help. But it’s unknown. Now stop googling and listening to Facebook groups. Go to trusted places of information – stick to websites like the NHS, the Royal Osteoporosis Society (ROS), the RCP’s FFFAP and the British Dietetic Association (BDA) – they all have factually correct information based on good research about osteoporosis. If you have medical queries, phone our nurse service at the hospital or the ROS helpline.’

As a former volunteer patient advocate with the ROS Research Academy, which played a key role in searching for a ‘cure’ for osteoporosis with the aim of a ‘future free of fragility fractures’, I was pleased to see that under the Research Academy Research Roadmap, ROS have this year awarded a research grant investigating vitamin K2 – meaning there should hopefully be more definite information in the future.