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 – but don’t blame your doctor either because s/he had no idea they were risking your health by prescribing these antibiotics.
*The term FluoroQuinolone Associated Disorder (or Disability) was first used by the FDA in July 2016. We often use ‘Fluoroquinolone Toxicity Syndrome’ but the EMA 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. This site hasn’t been looked after for a while but we are working hard now (July 2023) to bring it up to date with whatever research and news we can add in order to help you help us. Please understand that there is no “treatment” – although we do suggest some things that might help and also some definite don’ts (such as never give steroids or NSAIDs after floxing).
When we asked the MHRA why HCPs are not fully informed about the dangers, they replied that it was “up to each doctor’s professional training, along with their patient’s medical history, to determine the most appropriate treatment”. In other words, they know there is no treatment but they’re not going to tell you this.
In many cases the patient ends up either being gaslit or diagnosed with fibromyalgia – often with CFS on top. Please note that, despite what you have been told, fluoroquinolones do not “leave the body within three weeks” (more like years or perhaps never). Also, they 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’s always a huge risk which increases frighteningly the more you prescribe.
*(Does no one ever stop to wonder why an antibiotic can cause the longest and strongest tendon in the body to spontaneously rupture?).
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). We originally used ‘Quinolone’ in this group’s title as a few floxies were affected by one of these but the only reason to keep the name now is because it’s part or our identity.
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 plus 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 were issued in 2019 that were, in our opinion, very weak. (See Links).
Since Brexit, the UK agency, MHRA, are now looking themselves at the seriousness of fluoroquinolone side effects (hopefully this reflects the pressure we keep putting on them) and their own review is due to close shortly. Six of us have had video-meetings with both their review team and also 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 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. The panel’s task was to interview each of the shortlisted candidates and report back to DHSC. Dr Henrietta Hughes was appointed last year (we have no deal 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.10) 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 with 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, their lifestyle and age. These determine how each person reacts to any substance eg. medication, food, chemicals etc., and we all have varying degrees of tolerance to anything. Everyone experiences different adverse reactions to fluoroquinolones, although some can appear to be the same. 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.
The most important thing is to please try not to compare yourself with someone else, despite certain things looking similar. The groups are full of new people asking how many tablets others took and how long before they felt better. The answers won't help you.
There are no rules for recovery either. Some recover at a faster rate than others. Some relapse, or have ‘flare ups’, whilst others don't. Everyone is desperate to find a quick cure but, sadly, there isn’t one. Recovery is seldom a linear progression and it's often ‘two steps forward and one step back’ or could be ‘one step forward and two steps back’ for a time. Sometimes new symptoms appear and some things come and go. It’s no picnic – which is why we want to help if we can.
So, why are we here?
We want this site is 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. Of course they know fluoroquinolones (and many other drugs) cause a great deal of harm but they say it’s “not helpful” to tell doctors or warn patients. We actively want to try to help and support you.