About Us

Who’s a floxie?

Anyone adversely affected by a fluoroquinolone is a floxie. The term was affectionately coined in the USA, and while some people dislike it, we find it very useful. It can be easily used in many other ways e.g. “my floxie symptoms”, “when were you floxed?” or “how long does floxing last?”

Are you floxed?

If you’re here because something happened to you after taking a fluoroquinolone then the answer is probably yes. However, there are no tests to find out for sure, and there is no official diagnosis in the UK yet (although FQAD* is sometimes recognised). On the following pages we try to explain how and why fluoroquinolones are so damaging, and also why no two people are affected in the exact same way. Hopefully, by understanding what is happening, you will be able to help yourself navigate through what can be a very difficult journey of recovery. Sadly, the only thing we know for sure is that there is no quick cure.

We find many floxies are angry with themselves for taking the tablets or for trusting their doctor. Please don’t blame yourself.

*The term FluoroQuinolone Associated Disorder (or Disability) was first used by the FDA in July 2016. Another term is ‘Fluoroquinolone Toxicity Syndrome’. The EMA have stated they can’t recognise it because there are too many variables (which is the very nature of this particular problem!).

Are you a professional?

If you are and you’re trying to find out more, maybe to help a patient with baffling symptoms, please know that you are very welcome here and we are happy to answer questions. Please understand that there is no quick solution, but we do suggest some things that might help and also some definite don’ts (such as never give steroids or NSAIDs after floxing).

We find that many HCPs are not fully aware of the dangers. In many cases the patient ends up either being gaslit or diagnosed with fibromyalgia – often with CFS on top. Please note that fluoroquinolones can cause many more problems than the ruptured Achilles tendon which most doctors seem to know to look out for. Some people are floored by just one tablet while others can take one or two courses (we’ve even heard of 30 courses) with no problems, until just one more tablet kicks everything off. Prescribing a fluoroquinolone, even to a patient you know has happily taken them before, is like playing Russian Roulette – there is always a risk, which increases the more you prescribe.

Fluoroquinolone or Quinolone?

The older quinolone antibiotics were withdrawn from use in Europe in 2019 (and were no longer used in the UK long before then).

What do we do?

The main aim of the group is for everyone to support each other – only floxies can truly know what other floxies are experiencing. We share our knowledge from research and experience in order to help each other to better understand what’s happening and how to deal with it. Everything we state as fact (e.g. “fluoroquinolones can adversely affect just about every cell in the body”) is backed up with peer-reviewed research. Everything we suggest is based on the experience of thousands of floxies from around the world BUT we always add the disclaimer that everyone is different and what may help some people might actually harm others.

We also aim to raise awareness about how debilitating, disabling and even life-threatening adverse reactions to fluoroquinolones can be, and have worked with several journalists over the years (see Links and Resources).

Our ambition is for fluoroquinolone antibiotics to be removed from primary care and kept only as drugs of last resort in hospital settings. Fully informed consent should be obtained whenever they are used, meaning all prescribing doctors need to fully understand the risks. They are very powerful drugs nominated to tackle anthrax and other life-threatening infections such as sepsis, yet are often given out unnecessarily e.g. as a prophylactic for biopsies or “just in case” (pre-culture) of a prostate infection.

To this end we made submissions to the European Medicines Agency’s (EMA) review into fluoroquinolone side effects in 2018, and also took part in their associated Public Hearing. The findings of the review resulted in new restrictions and warnings being issued in 2019 that were, in our opinion, very weak (see Links & Resources).

Later the UK agency, the MHRA, also looked info the seriousness of fluoroquinolone side effects (hopefully this reflected the pressure we kept putting on them). Six of us had video meetings with both their review team and the Commission for Human Medicines (CHM) to present our lived experiences. All members of the group were invited to share their experiences and to suggest how the MHRA might minimise risks and increase awareness.

We have also had a representative sit on a patient expert panel formed to advise the DHSC on their response to the 2020 IMMDS (Cumberlege) report into patient safety. Six experts from this panel (including ours) were then asked to advise the DHSC on their selection of the Patient Safety Commissioner, a new role which was one of the nine recommendations of the IMMDS report. Dr Henrietta Hughes was appointed last year (we have no idea if the panel influenced this choice!) and she has already mentioned fluoroquinolones several times as an area of concern.

When did we start all this?

Our Facebook group was founded in 2015 by Miriam, a carer whose husband was floxed (see story no. 11 in Group Stories) and Debbie, who had already been researching since she was seriously affected in 2013 (see story no. 3). At that time there were several very large US groups on Facebook (and still are) but no information aimed at the UK, so we decided to fill that gap. Debbie has now retired from the group but has left us with her inspiration and her wonderful artwork, some of it made during her worst times. The image on the homepage, which is also our Facebook banner, represents her desperation dominated by the pain in her spine.

What have we learnt?

Everyone is unique because of their genes, lifestyle and age. These determine how each person reacts to any substance eg. medication, food, chemicals. Everyone experiences different adverse reactions to fluoroquinolones, but some reactions are more common than others. Many have calf and leg pains, many have gut problems, many have depression, anxiety attacks and insomnia, many have many things all at once. There are no rules.

So, why are we here?

We want this site to be seen as a useful tool rather than the bringer of doom and gloom. The information we give about the mechanism and actions of fluoroquinolones is intended to help you understand what is happening and how best you can help your body to repair. You don’t have to read everything, but rest assured that what we say has been established and is known (some of it for over 30 years) by the manufacturers and the medicines agencies. We actively want to try to help and support you.