Group Stories
FLOX STORIES FROM THIS GROUP'S ORIGINAL FACEBOOK MEMBERS:
These are a mix of some of our floxing experiences; none are complete.
They tell a combined story of our suffering and make for compelling and powerful reading. They are very personal accounts, full of loss and pain and deserve respect.
A word of warning, especially to the newly floxed - please bear in mind when reading these Stories that some are particularly harrowing. If you’re feeling anxious or fragile, you might prefer to leave reading these until you feel stronger. Always remember that, just because something awful happened to one person, it doesn’t mean this will happen to you. Many of these stories do need bringing up to date as some people have now greatly improved or recovered. Many, maybe most, do recover enough to move on with their lives but forget to tell us! We feel it’s important to have them here because so many people, including the GPs and consultants we trust not to harm us, have absolutely no idea of how devastating fluoroquinolone damage can be.
Gathered from Nov 2015 onward - Scroll down for recent additions
(1) Gradual return to work (GJ):
I was floxed in April, my worst adrs (Adverse Reactions) didn't start until the beginning of June which is when I realised what it was!! I have been taking MitoQ (an antioxidant product) since the middle of June, I'm not sure if it is helping or not but I am making slow steady progress, the main problems I now have are muscular/skeletal and digestive, oh and tinnitus!! All my mental adrs - anxiety and major depression have gone. Ruth Young on the Floxiehope website says about mitoq which is where I found out about it, I also took idebenone and pqq but no longer take these.
Currently I take mitoq, magnesium orally and topically, zinc, B12, D3 and probiotics.
I had 5.5 months of my employed job and kept my equine business ticking over with the help of friends and family, I started a phased return to work 4 weeks ago, it is hard going as I work for the council as part of a reenablement team (community care work) so it is physical. GJ
(2) Cipro – I thought he'd given me penicillin (JW):
I had a large dose, 750mg twice daily for 7 days. Three and a half years after that first dose, I can say I believe that it can affect every or any part of your body. But unlike breaking your arm, or having a headache, the healing cycles and is unpredictable. I think I could cope with 2 broken limbs or even an amputation but dealing with 6 problems day after day, year after year, with not one word from a health "professional" is life sapping. It's bad enough at my age but there are people in their twenties or thirties who are losing jobs, careers, relationships, confined to bed or wheelchairs. For what, a mild problem? If I sound bitter it's because I am. I think the ignorance displayed by medics makes matters even worse after being "floxed". JW
Plus:
This is what happened to me.....A doctor ruined my back 35 years ago, then 10 years ago they nearly killed my 18 year old son. So April 2012 I had no confidence in doctors, I was 66years old, very fit, cycle/walking daily. Non-drinker, non-smoker, not overweight, many outings with grand- daughters - we walked around Beamish Museum weekly. Did all sorts of DIY and had plenty of energy. Only one drug in my life was from a dentist in 1999 - penicillin. April 2012 I had pain in my groin. The young Dr gave me cipro 750mg twice daily 7 days (I thought it was penicillin). I queried tendons mentioned on the tiny print insert and he said you should be OK.
Long list of damage over 3.5 years which matches the insert. Matches 3,000+people on Facebook, matches Beatrice Golomb's BMJ report, matches Dr Cohen. Yet the GP says 3 times in a letter to me " it is not cipro". There has been no joined up thinking. No one answers any of my questions. It's as if no one knows anything about cipro. My list: head ,ears, eyes, neck, shoulder, knees, ankles, hair loss, joints, tendons, shooting pains, hernia, sleep, temperature control, tingling legs, body twitching, weight loss, muscle loss, loss of strength, legs clunk click, loss of fat, continuous yawning. A complete mess. Have to walk backwards down the stairs. No outings with my grand-daughters whatsoever. All I can do after 3.5 years is bike/walk 1 hour and a bit painting etc. I'm grateful I can do that. JW
(3) Three years on from Levofloxacin (DC):
On April 23rd 2013, my life, as I knew it, was halted abruptly, when I was prescribed Levofloxacin for a suspected, yet unproven, Respiratory Infection by my GP, on the advice of a Nurse Clinician at the hospital where I was being treated for a separate health problem; she recommended a very high dose of 500 mgs x 2 daily. Since then, I've been unable to work at all, paint as I used to, enjoy a social life, or function properly any more, let alone be a vibrant participant in society.
The day after the 3rd tablet of Levofloxacin, I felt more unwell and my GP saw me at home. I was trembling, weak, lightheaded, was tachycardic and I felt nauseous. I thought it was due to the infection. I was prescribed Prednisolone. After the 5th tablet of Levofloxacin I was worse still; aching all over, particularly my legs. I was even weaker, had severe back pain and was shaking. I began to cry uncontrollably and continuously for the next 3 days and nights but I had no idea why. I assumed that my aching legs and weakness, were due to having been in bed for a few days and that the antibiotic wasn't working yet, plus I hadn't slept for at least 3 nights. By the 6th day, I was deteriorating further and my aching legs were worse; the pain moved into my calves, which were throbbing and burning continuously. I began to experience cramps in my calf muscles and feet; this was happening every half hour or so. I didn't associate my symptoms with the antibiotic at this stage.
On day 7, the pain in my legs was severe and that morning, when I got out of bed, I limped. The pain had spread into both Achilles Tendons and all around my ankles; tops and bottoms of my feet and my toes. The pain was continuous and excruciating, even when lying down and also affected my shins. It spread to my hamstrings and I experienced muscle cramps all over my body; each time I moved my muscles felt tight. I had no energy and felt faint, with no appetite. I couldn't even lift my head from the pillow and every movement was accompanied by the most severe pain I've ever known. Over the next couple of days, more symptoms appeared. I became more short of breath; I couldn't tolerate any light; I felt chilled and couldn't get warm; my fingers and feet were tingling and some toes became numb; my heels hurt. I had widespread pain in all my joints and muscles and a strange rippling began in my feet, which were turning slightly blue. My knees felt like they were being stuck with pins. I knew something was very wrong now and had a vague memory of reading something about Achilles Tendons in the Patient Information Leaflet. The information was on the fourth page and written in such tiny font, I needed a magnifying glass to read it. Through my very confused and foggy brain, with blurred vision, I began to make an association with my own symptoms and researched online. I was stunned by what I found but still couldn't believe that an antibiotic could do this.
The next morning, when I tried to get out of bed I was unable to walk. I couldn't lift my feet off the floor - they wouldn't flex. I could only shuffle very slowly and the pain was indescribable; I felt like I was walking on pebbles and my legs were heavy, like dead weights. I described them as feeling like huge dead tree trunks. The throbbing, searing pain made them seem huge, though they looked normal and small. I've never had any problems with my Achilles Tendons before, nor experienced anything like that level of pain and I had known severe pain before this. I rang my GP, who told me to stop taking the Levofloxacin immediately. I was terrified and my GP prescribed Oramorph as an analgesic. After consulting with a colleague, she recognised that I was having a severe Adverse Reaction to the Levofloxacin. She had never prescribed Levofloxacin before and said she never would again.
I was to be completely bedridden for almost 6 months and nobody could tell me when or if I would ever be able to walk again. Nor did I know if my other symptoms would disappear. By now, I knew these were also Adverse Reactions to the Quinolone. Nobody could give me any answers or solutions; not even my GP but she wanted to help, in any way that she could. She gave me unconditional support and still does. In terms of practical help, she contacted a Pharmacologist for advice; there was nothing to be done except to rest and wait and see... I could do nothing else anyway. The advice was that my Achilles Tendons would be fine in 3 months and that some Physio would help. None of this was true.
My GP arranged for me to have an Ultrasound Scan, which showed changes to my Achilles Tendons and Plantar Fascia. There was no explanation for these and they were attributed to the Levofloxacin. She also referred me to a Physiotherapist, once I could get out of the house and before that she arranged for another Physio to see me at home. Neither could help, because the damage to Tendons through Quinolone Toxicity is different from damage from an injury, i.e. the Collagen was degenerating across the whole area of the Tendons and not only in specific places. The Physiotherapy made me much worse. I was at high risk of rupturing both Achilles Tendons and would remain with the fear of this for a further year. She referred me to a Dietician who also saw me at home, because my weight had dropped dramatically; I lost over 2 stones in 2 months and am only now regaining the lost weight. I suffered from Insomnia and still do, 3 years on and when I did manage an occasional hour's sleep, I was woken with nightmares, night sweats and I suffered Panic Attacks (I had never had these before). I was unable to be in a completely dark room and couldn't lie down flat as I was so short of breath and felt like I'd suffocate. Thankfully, the panic attacks stopped after the first year.
At 3 months out, I lost my voice and was referred to an ENT Specialist. My vocal chords were dry - Quinolones dry out mucus membranes. The specialist was no help and laughed at me when I mentioned the link between Quinolones and dry mucus membranes, though he couldn't offer an explanation or a solution. There was more fear, as I had no idea whether or not I would ever be able to speak again. So then I was bedridden and couldn't even speak on the phone to my children, other family members or friends. This left me even more isolated and my anxiety rose to an even higher level. My voice didn't return for 4 months.
My GP wrote on my Primary Care Medical Record "Adverse Reaction to Quinolone and Hydroxyquinolone Derivatives" plus "Severe Reaction Tendinopathy with Bilateral Achilles Tendinopathy and feet sore. NOT TO BE GIVEN QUINOLONES". It was also written independently on my Hospital Medical Records (in a different Health Region), "Quinolone induced Tendonitis - MUST NOT BE GIVEN QUINOLONES IN THE FUTURE".
3 years out now, I still can't walk for long (it took almost 2 years to walk a little) and I have continuous pain in all the originally affected Tendons, joints and muscles, plus the tendons in my thumbs and fingers are tight. My hands cramp. My wrists hurt and my arms get heavy and ache, to the point where I can't lift them and I suffer from ongoing Fatigue. I have Peripheral Neuropathy - numbness, tingling and pins and needles in my feet and hands and I still suffer constant cramps in my thighs, calves and feet. I feel a strange buzzing in my feet and often experience an inner trembling all over. My muscles are still wasted. My eyes, which are now dry, can't focus properly and my vision is blurred. I have dizziness and often feel faint; I've been dx (diagnosed) Paroxysmal Atrial Fibrillation. I have memory loss, brain fog and lose concentration easily; I have trouble organising my thoughts. I am still Photosensitive and can't tolerate heat, despite feeling cold much of the time still, though there are also times when I feel very hot, as if I have a fever. My teeth are crumbling and my hair has thinned. I have aged faster than I should. I have gone from being a calm and patient person, to one who is quick to become agitated and overwhelmed and I cry easily. I can't control my emotions as I used to and my anxiety is much higher than before. I've developed endocrine problems, where my Adrenals aren't producing Cortisol and I have to take low dose Hydrocortisone, just to bring my levels up to normal.
There are times when I feel disconnected from the reality around me; I'm there but not. I go through the motion of living but it feels like I'm in some kind of parallel universe. There were some dark times and I often felt despair...still do sometimes. The mental and physical pain is still present, plus the fear of what might happen yet, as a result of the Levofloxacin, with its cascading and continuing multi symptom reaction.
I count myself 'lucky' though, for unlike many others who don't have support from their doctors, I have a GP who has been there for me and despite not being able to cure me, has given me her time; listening to me, often just being with me whilst I have cried with anger, pain, frustration and fear. I have still met doctors, specialists and nurses who have laughed at me, not believing me when I've told them what caused my suffering. So many times I was right on the edge of falling apart, both physically and mentally.
So, at my 3 year Levofloxacin anniversary, I still suffer from Quinolone Toxicity Syndrome, wondering if this will ever end... and the extra strain on my family has taken its toll. Those 3 years are lost and I am changed. My life is very different now; more fearful; much smaller; much quieter, with more pain and less joy and I haven't completed a painting for 3 years. Somehow, I've carried on living, through what I can only describe as a nightmare and although life is much better than it was, my suffering continues. I'm grateful for the support of my family, some friends, online support groups and my GP, because I'm still here, while others poisoned by Quinolones are not; 18 tablets of an antibiotic I didn't need, taken over 10 days, wrecked my life... DC
Update: 2019. Six years on from Levofloxacin (DC)
Three years ago, I said my life had been wrecked and I was half right. My old life had been but I have a new life now. Gradually, I continued to heal from the effects of Levofloxacin and I feel virtually recovered; certainly from the severity of my ADRs. I can walk, though I still feel some pain in my Achilles, feet and ankles and my shoulders and Biceps hurt sometimes. I still suffer from cramp in my feet, calves and hands. I’m not sure if the residual pain I feel is in my tendons or in the nerves, which lie next to the tendons. Although I sleep, the pattern isn’t what it was before the Levofloxacin and I wake with pain in my shoulders and need to change position during the night.
I continue to have some problems controlling my emotions and organising my thoughts and I still become overwhelmed easily. My vision remains blurry. About a year ago, I developed a couple of new ADRs - small patches of intense burning, as if I’d been scalded, on my upper legs. These are short lived and occur only occasionally but I wonder if they’ll increase. I also began suffering from sharp, electric shock type stabbing pains, often in my thumbs, though sometimes in my feet. Again, these are occasional and they’re over quickly. I wonder if my general health will worsen over time, as my mitochondria have been affected and I live with this uncertainty, but I can live.
I said that the experience of suffering so badly had taken its toll on my family and last year my marriage of over 40 years ended in divorce. I live alone now and in a new area.
So, I’ve begun a new life with a new vigour that I thought would never return. Co-founding QTSUK gave me purpose and direction, which helped me too, along with helping members of the group. I’ve also begun painting again; only a little but it’s a start. DC
(4) Cipro for a UTI followed by IV Cipro (KG):
My partner was floxed last year after taking Cipro for a urine infection that was 'probably' hospital acquired. After 4 days of taking it, he described a 'back breaking ' pain. He then checked the side effects ( typical bloke) and discovered pain was a rare one. Day 5 he went to hospital with a swollen leg ....septic arthritis needing a surgical washout.He had no Cipro for the first three or four days post surgery and said his pain had resolved. When he was seen by an Infectious Diseases Consultant he was told he'd need industrial antibiotics for up to 6 weeks....including daily IV with Cipro.
He expressed his concerns to the Consultant but got dismissed. He followed the recommended treatment programme and I saw a big deterioration in his condition ....He turned from a fit, fully mobile 56 year old to an old man overnight. He needed help to get out of the bath, couldn't get out of a chair easily ....
He is pretty much an ostrich when it comes to medical stuff so I was amazed when he started to research Cipro and found all the evidence online. We mentioned it to his Consultant who was very dismissive. However, a week later his Consultant rang him requesting an appointment. He admitted that we'd given him food for thought and he'd researched what we had told him.
He had found a lab in the UK who would do fluoride testing, recommended he stop using fluoride toothpaste and magnesium tablets. The fluoride test showed elevated levels in his urine sample...Our local biochemist felt the test was skewed as he hadn't done a 24 hour analysis but his Consultant felt an elevated level was an elevated level.
15 months down the line, his mobility and stamina have not recovered brilliantly although he has better days .
I'm so angry that this has happened. Why is no one listening? The evidence is out there, the black box (warning on US patient leaflets), the medical reports. I'd refuse Cipro if offered in the future as I don't want to take any risks. KG
(5) Cipro for groin pain – 6 trips in an ambulance (GR):
Ok here's a super brief version of my Cipro journey down the rabbit hole - Was ridiculously fit, training crossfit strength programme.
I had nerve impingement from groin/lower abdomen misdiagnosed, initially prescribed doxycycline (adverse reaction I realised some six months later - which led me to seek more medical advice) then given Cipro - 8 days 750 mg twice day prescribed with Diclofenac nsaids. Didn't take nsaid during luckily. (note Non-steroidal anti-inflammatory drugs should never be prescribed or taken with Quinolones!). Final day, had sex, felt like head exploding. Following days panic attacks for first time in life stopping me from work. Electric shocks across whole body, optic nerves, teeth, fasciculations across whole body leading to whole body meltdown as if plugged into electric socket, acid-like ants across body sensation as if going mad. Two weeks of electric shock sensation through anus, perineum and penis, initially 9/10 agonising, no control of bladder, urinating felt like acid burn - as if had electric shock torture equipment inserted. Next came all joints breakdown, disabled unable to walk, every joint crunched audibly, burning sensation through spine, myoclonus (note - a brief, involuntary twitching of a muscle or a group of muscles), inability to sleep for weeks. A range of bizarre symptoms including arms feeling dead, dozing off then massive jerks and waking up with wheezing groaning lungs, digestive shut down for three weeks - lost twenty kg muscle mass, had to be lifted into and out of the bath, sensations at night as if gi tract had come alive - hard to describe this part. Night terrors/hallucinations, arrhythmia-tachy and brachycardia. Bleeding gums, greying of teeth, full retraction of fingers involuntarily. Hypo-Postural tension, collapsing on attempting to stand up, head would feel as if filled with blood. Then intra cranial pressure as if blood crushing top of skull and not flowing back. Range of burning sensations through body eg javelin through left mid back into mid sternum. Inability to focus and floaters in vision. Poor blood flow in extremities ie feeling cold and visibly white/blueish fingers when outside in cold. Buzzing in various body areas. Brief period of electro sensitivity to lights, wireless game controllers, and when I was able to get out to supermarket - to all refrigeration areas. Electrical scrambling sensation through brain - as if going totally mad. Acute sensitivity to sound - even a drop of water in bath made heart pound/race. Postural girdle where abdomen tensed up so I was barely able to breathe, sensation of objects moving in throat and ear… And many many more unpleasant experiences. This lasted for approx six months. Another six months low level and for last four years mainly just intracranial pressure and mostly post exercise but can be sleep destroying ie will lose almost night's sleep as result. Saw Prof of pharmacology who privately advised Cipro caused my initial month's reactions without question. My partner was present and we documented his words. However he wrote to my GP that I had imagined the symptoms, so I wrote explaining what he had actually told us, and was advised this had been noted.
About six trips in ambulances to A and E during this time and various diagnoses given by GP including at one point cancer, all of which were wrong. They did identify a genetic condition on my femur ‘fibrous dysplasia’ that probably led to the nerve groin issue in context of exercise regime. Orthopaedic surgeon insisted my femur would break and kill me by severing femoral artery, he sent me to endocrinologist who found nothing and advised I needed another toxic drug of the bisphosphonate class Fosamax that I refused. Ditto the operation for an intramedullary nail/titanium rod… so far despite cycling, skating and weight training I've managed to survive without drugs and operations….. Little to no faith in NHS or medicine as result of the experience. GR
I took a largish dose foolishly and exercised through that dose, I'm sure that didn't help. I took a few Diclofenac a day or so afterwards which also would have worsened the FQ. When really bad I was given a handful of diazepam which I also stupidly took to cope because I had further adverse effects which I didn't discuss. I think just listing parts of what happened isn't re-traumatising but if I get into details and think/feel back into it then a residue of post traumatic stress type stuff starts to reappear. I have some low level anxiety effects that I didn't have before too, but I have a few mindfulness based tools and dietary methods I use for addressing that when it raises it's head. I know that many people haven't recovered at all and others who are now dead due to FQ so I feel gratitude that I can share my story here. GR
(6) Cipro for suspected prostate infection (DCo):
3 courses of Cipro 250mg = 90 tablets over the space of a year. I had pain and thought it was infection and it wasn't. It was given for suspected prostate infection and I was taking it with NSAID's. I felt like I was dying, I even hallucinated and had all over body sensation like GR mentions. When I was finished almost with the course I saw my old doctor who's now retired, I had a talk with her and she was surprised and concerned so she sent me for an examination on my ankle tendon that was a big problem at the time as it felt very weak and unstable. I was told to rest up and see how it was in 3 months. My Achilles did get better but it took over a year to get strength back. Doctor put a statement on my med records - no more treatment with Fluoroquinolone.
Before 2009 I hardly ever visited the doctors but since then I have never been away from doctors or hospital having tests for either rheumatoid arthritis, heart arrhrythmia and tachycardia, and thyroid disorders which show I have all 3 conditions. I have not been the same person since, and have had heart problems and thyroid problems for 5 years since stopping the drug. I also lost my full-time job in 2010, I was a mess because my leg stopped working and I couldn't walk properly. DCo
(7) Floxed eight times (D):
I am a very long term survivor of fluoroquinolone toxicity, having first been floxed way back in the late 1980s. I was sent into acute toxic psychosis within hours, and as a result of being prescribed psychotropic drugs, including an antidepressant which I ALSO had a severe adverse reaction to, and subsequently getting misdiagnosed, I then ended up literally losing the next 12 years of my life. I eventually extricated myself from that hell hole once I got myself off those psychotropic drugs, (so I am a very long term survivor of Psychiatry also). Having finally extricated myself from that particular nightmare, I subsequently realised there was something VERY wrong with psychiatry and those psychotropic drugs, and thus began 16 years of research into this subject, along with research also into Big Pharma and allopathic drugs of all kinds. What I have found behind the scenes whilst doing this research is horrifying .
Unfortunately at the time I was first floxed, not knowing anything about FQs I was subsequently floxed several more times, 7 in all, before I finally joined those dots after I acquired my medical records. Intriguingly, I discovered from these records, that I have also since my first very damaging floxing taken FQs twice with another serious floxing in-between, when I apparently had no noticeable/visible reaction whatsoever. The next time I did react was with IV levofloxacin. That time I developed heart irregularities within hours which luckily resolved, however this particular floxing led to a misdiagnosis of ME/CFS. I now carry no less than 3 misdiagnoses, and have over my numerous floxings experienced the vast majority of symptoms at one time or another.
My most damaging floxing was caused by my being prescribed Cipro, along with a high dose of an NSAID whilst I was using a steroid nasal spray, that one completely trashed me both physically and cognitively, and that particular reaction I am still dealing with. Although I have improved again over time and do slowly continue to head in the right direction on the whole, I now have some permanent damage (not surprising considering the amount of times I have been prescribed this poison).
Sadly, I have not found in all the years I have been dealing with the fallout from this truly abhorrent crime against humanity a single allopathic doctor in the UK who is prepared to admit that there might just possibly be a problem with these so called 'antibiotics' (really chemotherapy drugs masquerading as such, these Topoisomerase inhibitors from hell.
The disinterest, the complete lack of curiosity from these doctors, it just puzzles me no end. At some point, these intellectually gifted people that choose to become doctors seem to have completely lost their ability for independent thinking and critical analysis. They do NOT work outside the box, HELL! they do NOT even LOOK outside the box, let alone realise that with fluoroquinolone toxicity that there actually is NO FQing box! They perform NO independent research or picture building of their own, instead, they just continue to absorb what pharma lies they are fed, assimilate these and repeat.
The medical abuse I have personally experienced whilst on my journey to try to find validation and help from the allopathic medical profession, it just simply beggars belief. At the end of the day, these doctors, even if they do actually believe us, they cannot help us heal, all they can do is prescribe more chemicals for the various symptoms we have, and that’s the last thing I personally need. We are NOT sick, WE ARE POISONED, and our allopathic doctors, THEY of course do NOT have a clue how to Fix DNA/ mitochondrial damage. In my experience and opinion, we actually can’t be fixed by the same system that broke us, as in that particular system cures are NOT allowed. Therefore I now avoid allopathic care as much as possible …. I truly believe I will live longer that way. D
(8) Cipro for chest infection – with Prednisolone (JA):
In March 2013 I took the best part of a week's course of ciprofloxacin 500mg twice a day and a short course of prednisolone tablets for a chest infection and have never been the same since. I have suffered many of the listed side effects of ciprofloxacin but the worst for me is chronic nerve pain which I still suffer today and my intolerance to nearly all medicines and invasive procedures which was never a problem before taking ciprofloxacin.
My pain ( burning, stinging) is widespread and worse on the right side of my body which makes sleeping, sitting and functioning on a daily basis very diffcult and distressing.
Sadly I'm now in a worse place physically, mentally and emotionally than I was a year after taking ciprofloxacin because of a complete lack of awareness by doctors (and pharmacists & nurses) of the potentially severe long term adverse reactions associated with Ciprofloxacin (a member of the group of antibiotics called quinolones) and a lack of suitable treatments.
I have seen many specialists over the past few years including a rheumatologist, neurologists, a gynaecologist, a psychiatrist and pain management consultants in an attempt to find answers and recover, only to have been left with more pain and suffering post invasive investigational procedures.
I have tried supplements, diets, acupuncture and pretty much everything that others have tried to recover without success. I am no longer able to work and struggle to cope on a daily basis.
The saddest part of my story is that I am a pharmacist and wasn't aware of all the devastating potentially permanent neurological side effects associated with quinolones and neither were any of my colleagues or any of the doctors I have seen since.
There are times when I wish I were dead because of the pain and suffering and because of foolishly agreeing to have investigational procedures undertaken which have made matters worse.
I'm not a hypochondriac, and this pain is never imagined, but sadly I feel I have been labelled as such by some of the doctors I've seen.
I will continue to support the group as best I can in my endeavours to:
1 Restrict the use of quinolones
2 Increase awareness amongst doctors, pharmacists, nurses and patients of the severe adverse reactions associated with quinolones
3 Educate doctors and pharmacists to recognise adverse reactions to quinolones
4 Find treatments/preventative measures to alleviate/limit adverse reactions to quinolones and educate prescribers about them.
5 Request more research into the safety profile and cause of adverse reactions to quinolones.
6 Investigate potential links between the use of quinolones and patients diagnosed with chronic fatigue syndrome, ME, fibromyalgia and in other patients diagnosed with chronic pain without a primary cause/ diagnosis.
7 Access all clinical trial data for quinolones pre and post licensing with the ultimate intention of challenging the drug manufacturers and holding them responsible for needlessly ruining people's lives. JA
(9) Cipro 22 years ago (BH):
I was poisoned by Cipro 22 yrs ago, I had burning all over my body like actually being burnt, and my skin felt like severe sun burn. Joint pain was horrendous, I lost 2 stone in weight and was vomiting all day. I also had/have: unbearable buzzing in my head, eyes, mouth, lips burn constantly, buzzing, fizzing, tingling all over my body, chronic nose bleeds, veins in hands and feet swelled, a blue tinge in feet, hands, some teeth fell out, could not walk, I could not sleep - still can't. Muscles went floppy, my friends and family thought I would die, so did I. I was so ill, to the point I wanted to commit suicide, as I could no longer stand this level of pain. I lay in bed with ice packs on me because of the burning pain, I felt like I was being burnt alive. My husband had to take me to work with him a few times, as I just wanted to die. I am still in pain, cannot walk far even now, I get popping in my head, neck joints even now. BH
(10) Cipro for UTI 4 years ago (MK):
My husband, P, was diagnosed with Primary Progressive MS about 25 years ago, and it has run the usual course of him slowly becoming more disabled from the feet up. When his bladder nerves stopped working he was fitted with a permanent catheter which was fine for five years then the typical urine infections set in. During a particularly bad infection (our GP said he was going for a complete set of superbugs!), he was prescribed Ciprofloxacin and after he completed the course the infection was gone. Perfect.
A few months later he was ill with other problems plus another urine infection for which he was given Cephalexin (NOT a quinolone). At the end of the course I took in a sample to check all was clear, and was surprised to be told he'd been given another antibiotic - Ciprofloxacin again. It was Friday evening, so he took one tablet (500mg) then and one at bedtime, plus 2 the next day. By Saturday evening he was in such pain he begged me not to give him any more. Very unusual behaviour!
I googled Ciprofloxacin but found nothing remarkable - then I googled “Problems with Cipro” and found a whole new world - of pain! I didn't want to alarm P with what I'd just read on a site called “Cipro is Poison”, so I just said it has side effects and best not to take any more. I started to give him extra vitamin C as an antioxidant, along with evening primrose oil and Vit E. Plus I read as much as I could about it.
On Monday morning I phoned the health centre and spoke to the GP who'd prescribed the Cipro. He said he'd never heard of 'floxing' or adverse reactions to these antibiotics. He also told me Phil's urine sample had come back clear - he'd prescribed the Cipro as he thought I'd taken the sample in because there was still an infection! Thanks, Doc, you should have read the form I sent in with it!
Three years on, and P is just starting to get enough strength back in his legs to walk with the zimmer frame he used before he was floxed, although we'll never know how the MS has affected his recovery from floxing. He got over the intense pain after a few weeks, but was left with 'brain fog' that still affects him today. He had various other symptoms ('electric shocks', hearing and visual disturbances etc), but again, because of the MS and being in bed most of the time anyway, it's not clear how he would be without the floxing. All I know is, it might well have killed him if he'd taken the other 5 day's worth of tablets! MK
(11) Just 2 x Moxifloxacin (DF):
Floxed August this year with 2 x Moxifloxacin oral. Suffering ever since. My legs are sore and my mobility is impaired but I've never lost my ability to walk. It's the CNS damage that I am suffering that is the worst. Anxiety, depression, brain fog, electric shock pain, vision problems, GI problems. The worst at the moment is the vision. I'm dizzy all the time and my vision seems somewhat skewed. It's not blurry but I have a general cross eyed feeling.
I get all over body sensations of restless legs. I call it "fizzing" when my wife asks me to describe it. It starts as flutters in my stomach and then spreads to my whole body... Paracetamol seems to do nowt and scared to take anything else for the pain..DF
(12) Cipro last year – a waiting game (RM):
I'm now ten months out from a 21-day course of cipro 2x500mg for a urological infection which arose from a prostate investigation. The investigation had a happy outcome, but they left me on the floxie hook as a going-away present. I still think I am a mild case so far and I'm able to live much as I did before, albeit a bit more carefully. I have significant FQT symptoms, but some of them could be dismissed by doctors as signs of ageing (I'm 60). I worry that I may be a floxie-in-progress, however, and I'm playing a waiting game over a year or so to see what may develop.
I seem to be mainly a musculoskeletal case so far, with neuropathic and myalgic symptoms and possibly some tendonitis in my shoulders, triceps and my lower back. I have clicking and cracking in various joints, but no grating in the joints themselves. The trouble is that I already had signs of wear-and-tear in my spine before the cipro so FQT symptoms could be confounded with ageing symptoms by doctors. My legs are stiffer than normal and there is some fluctuating soreness in the soft tissue around the knees. I think my Achilles tendons are stiffer than normal and there is mild, fluctuating pain in the fleshy area below the ankles, into the heels. I'm not in severe pain and can walk normally, but my legs stiffen up when I sit and then stand up. I have to "pop" the joints in my rear pelvis so I can stand without discomfort.
I seem to have flare-ups of the myalgic pain/discomfort which last a day or two and then subside. I think this is because my body now has impaired recovery from exercise or being active. I can do things without much discomfort, but pay for it the next couple of days. I have developed Raynaud's syndrome and fluctuating redness in my face and nose, with flaky skin. I have vertical ridges on my fingernails and Beau lines on two or three of them. I think these are signs of a shock and impairment to the fine blood circulation, which has left me with a form of vasculitis in the small vessels. I'm hoping this won't worsen and will resolve in the longer term.
My lower gut became upset at month 8 and I may have developed a gluten intolerance or IBS. It is mild so far, but uncomfortable, antisocial, and shouldn't be ignored. I'm testing whether it's a real FQT effect or caused by taking certain supplements. I hope it's the latter. I've had paroxysmal atrial fibrillation since boyhood, but I've recently had more frequent and prolonged bouts of this. I'll see my GP if it persists. I developed fluctuating but persistent tinnitus two months out. It's a high-pitched ringing noise which sometimes resembles chirping crickets in accordance with my pulse. I also have much more frequent transient tinnitus than normal, alternating between ears. I don’t seem to have noticeable hearing loss, I’m relieved to say andI don’t seem to produce ear wax now.
I've researched about FQT since I finished the cipro and followed advice on the excellent website Floxie Hope. I've acted on advice about nutrition and supplements, but tried to keep it manageable and affordable. I take magnesium glycinate 400mg or 600mg/day, and various vitamins and supplements for nerve care and collagen support. I don't take mitochondrial support supplements because I don't have chronic fatigue and they are expensive. My biggest fear is progressive degradation of joints and tendons such as the Achilles with the possibility of eventual rupture. I hope my diet and the supplements will keep this at bay. RM
Update - Ground Zero + 18 Months:
As a mild case, I'm reluctant to be "all about me" when some of you are really going through it. Month 18 has just passed for me, however, and I wanted to document what can go and what can stay in such a case. I feel well generally and my residual symptoms are "just" musculoskeletal. A major worry was the possibility of tendinopathy and tendon ruptures, but I seem to have avoided significant tendon symptoms. I say this bearing in mind I'm now 61, so supposedly at greater risk of such things. My next-day recovery from exercise and activity has been impaired a bit, but I think that would improve if I kept at it regularly, frequently but moderately.
I think I'm one of those who have had a warning, as discussed in the Flox Report and by Lisa Bloomquist Palmer in the Floxiehope website. I'll review again at month 24, which I think is definitive in assessing progress after a moderate floxing.
What's gone (I hope!):
* Clunky trochanter "bursitis" in right leg/hip. I feel stable on my pins now.
* Burning aches and stiffness in upper pelvic joints and back.
* Foot pains, especially when walking. Flexing big toes was painful along the tendons, but these tendons weren't painful passively.
* Overnight redness, burning and neuro flares. May have been a food reaction or even a supplement reaction.
* Fierce, throbbing neuro-stabs in extremities, especially when winding down in bed.
* Tummy grumble, loose motions, volcanic gas, vague burning ache in abdomen either from the back into the front or vice versa, but couldn't be sure.
* Sharp burning along the flesh of the thumbs and digs in the thumbs and palms.
* Continuous myalgic burns/pinching pains in shoulders, pelvis and legs. I used to brace myself before standing out of the car.
"Ow, ow, ow!".
* Feeling of fragility and reduction of robust bulk, although I wasn't emaciated. I was thinner for a while, though, and I'm still thinner around the abdomen. I feel stronger again.
* Atrial fibrillation. I still get an occasional mild flutter, but I've had that all my life. The intense, persistent bout I had last April hasn't returned. Likely to be an OD of magnesium glycinate.
* Mock Raynauds syndrome in hands. Improved this winter, but still a hint.
What I've still got:
* Rice Crispy Syndrome - snap, crackle and pop. It seems to be the ligaments, not the joint surfaces. I wonder if they are dehydrated, less elastic, etc. The wrists are the worst, then the knee and ankle areas followed by shoulders/clavicles. I sometimes get a grindy clunk in the joint between neck and left trapezius. None of this is painful...so far. I've gone back on fish oil and glucosamine and chondroitin, but I'm aware of the opinion that these may be overrated.
* Left shoulder has a chronic pain issue, but it fluctuates and varies in type. Something clunked at the front of it today and the pain has eased somewhat. Maybe a rotator cuff instability or tendon impingement , but I don't really know. If I stopped playing guitar, it might heal over time. It needs scanning, but no NSAIDS!
* Possible neck instability from C7 and/or head/neck joint, but uncertain whether it's been worsened by cipro or not. I had a bout of woosy head and eye discomfort, like I wanted to go cross-eyed. It's eased off, but there's still a hint of it occasionally. No pain, however.
* Tinnitus. A high-pitched ringing that's usually in stereo, but sometimes shifts to the left or right. No ear wax, which I used to get a lot. This tends to be one of the most persistent symptoms,
apparently. It's tolerable and I often forget about it.
* Occasional muscle twitches, but randomised and don't persist in one place. Possibly aggravated by a binge of tea and coffee and not concerning.
* Occasional, localised, muscular pinch-pains. Not distressing, but an unwanted souvenir.
* A couple of slighly wobbly molars, but can't be sure if it's cipro related. Really need a dentist's opinion as to whether the "wobble" is significant.
* A tendency to have a red nose tip and occasional, sore nostril hair follicles.This is a circulatory effect of cipro. I manage it with Savlon cream.
* Shoulder and arm myalgia flares caused by resistance exercise, eg Bullworker. I'm not a gym rat and the bike seems OK, so I'll roll with it. I should swim.
* High muscle tone and lean-ness. I'm mobile, though, and not very stiff. I should be glad about this at 61, I suppose, but I'm going to get checked for some hyperthyroidism as a precaution. RM
(13) Ofloxacin for epydidymitis (TD):
Over the years my health has been closely monitored, bloods, urine and my Peripheral Neuropathy, among other things, due mainly to my HIV, diagnosed 1999. I was taking drugs for HIV which are not 'weak meds', and one of them boosts the effects of other medications. My GP wanted to prescribe a Quinolone antibiotic for a urine infection, and she checked with the HIV clinic to see if I could have this medication - apparently it was borderline as to whether I should take it, but I was given two 28 day courses of Ofloxacin - one for Epydidymitis. I took them because the pain in my testicles was rising (“reached a pain only a man would understand”)
and I became incoherent. Although my health was not the best before them (Quinolones) it is very markedly worse now. I seem to be suffering what I can only call severe mental health problems, some of which is down to doctors basically ignoring me as I told them all I was getting worse and they left me until I was all but incoherent.
Only recently I got a GP who prescribed me something to keep me calm-ish, and I am still trying to get a mental health assessment and a medical.
Thanks to people who have helped me through really rough patches.
The NHS apathy or as I call it, covering their own ars@s, I would have found hard to believe if it was not happening to me.
Why the fck should I have to go through this, when I have been telling them, all of them, docs, consultants, social workers etc what has and was happening/happened to me? So important for me, that I don't start shouting, if I do I am done. This was not my life. TD
(14) Cipro in Dubai (AH):
I'm about 4 months along after Cipro (15 pills over 5 days). I got ill on honeymoon in Dubai and had to go to hospital. I took the pills and felt better with exception of a lower appetite, but put that down to feeling ill/being dehydrated before. Thankfully the rest of our honeymoon was fine! Soon after things developed...
I had GI symptoms (treated for threadworm three times to no avail) and had flu-like symptoms through August. I started back at work teaching in Sept but wasn't any better; I felt so tired and wasn't enjoying myself. The third week I went part time. The fourth week I had a migraine (never had one before), which I took as a sign to step back. I've been signed off since, with all tests, so many, coming back normal.
In October I resolved to walking once a day, but have gradually built this up now to a daily routine of yoga, meditation, swimming 30 lengths (woop!), walking, playing guitar and eating well in between... I feel great for it but still tired and foggy. If the fog would go I'd feel liberated!
I want to work, so am planning to start a phased return. My doctor is sympathetic and supportive.
Happy happy happy! AH
Then this good news, almost a year later:
So life for me is near enough normal. I'm back at work full-time, but now off for school holidays! Still exercising, though I've dropped pilates, as I got a bit bored and preferred watching Dexter! I'll be starting up again in September at work anyway. I've rediscovered rock climbing, once a week and I swim twice a week. Diet is normal, still taking MitoQ and D-Ribose, plus 25mg of Sertraline. I eat healthily, give or take a take away once a week and chocolate :-) I can walk normally and cycle occasionally. My wife and I went out and bought a new car today and we're looking to move out before the end of the year. Why? We're expecting our first baby around January 5th. I feel happy more often than not and I've got lots to be happy about. I'm not as tired as I used to be. All this when I was at my worst in October/November (living on the sofa!) I want to say thanks to you all for being here. I'm giving it a year, then I'll contribute to Floxie Hope (Recovery Stories). AH
And this, another 6 months later:
Reduce stress, exercise in whatever way you can and meditate. There's other stuff that may/not have helped (I have taken MitoQ for a year). Patience has been key! There are still difficult days, but you have to believe tomorrow will be better. I would not have seen myself here a year ago. We're all different, but we're all the same - kind and helpful. So long as we have this, we can improve; even if it's our way of thinking. Take care and be in touch soon - I have a nappy to change! X AH
(15) Cipro for 'slight' UTI (NRP):
Hi. I went into hospital a few weeks ago with a UTI. I was on an IV with antibiotics and responded well. All scans and tests came back normal and only a slight infection was detected. The next day a doctor saw me and gave me a prescription of Ciprofloxacin for two weeks. All he told me was I would suffer from an upset stomach. There were no ward beds available but I would be safer at home. After six days I was taken off Cipro by a GP.. My tendinitis was horrific and I couldn't walk. Two weeks later it has worsened and I've been marked as a risk of tendon rupture. I find everyday a struggle. From not wanting to wake up to not being able to be a mum or partner. I see a doctor regularly and am supported greatly by all around me but I still find it hard to accept my life was turned upside down by a few tablets. It would also be nice to talk to others in the same situation. At this moment I'm just overwhelmed I think but it will be great getting to know you all. NRP
(16) Cipro for prostatitis – then an Ibuprofen (CH):
It started in 2012 when I developed a suspected urinary tract infection (UTI). I visited my local GP who prescribed a course of antibiotics. A couple of weeks passed, the UTI subsided only to return a couple of weeks later. After 3 UTI’s I had already done a bunch of research and suspected it could be a condition called Prostatitis. The problem was that I was in the middle of moving to Norfolk from Reading so I had been seeing various GP’s. I suggested Prostatitis and it wasn’t entirely excluded but since it is a condition that is very difficult to diagnose it was side lined. Over the next 16 months I had another 12 UTI’s, some of which I passed blood, each time I was given a bunch of antibitotics, each time the symptoms subsided. Finally I was referred to a consultant and had a endoscopy performed (very uncomfortable) that found no obvious issues in my bladder but did leave with with on going pains to this day. After that I was sent to have my colon checked and a colonoscopy was performed, again no obvious signs of any issues. I had 3 CT scans done over that time, only some signs of Diverticular disease were found as expected at my age on a western diet.
Finally I was referred to another Urologist in May 2015 and 18 months after I suggested it, he agreed it was likely I had Prostatitis! If they had listened to me before I could have avoided probably a dozen doses of antibiotics which no doubt screwed up my internal microbiome. His treatment was to get me to take another stronger antibiotic called Ciprofloxacin, a Fluoroquinolone (FQ) antibiotic, for 6 weeks. This was apparently the usual approach and the drugs were much better at dealing with deep rooted infections. What he didn’t tell me was what could go wrong, what side effects I could expect or worse case scenario - the long term effects.
As with most people I was desperate after so long dealing with the UTI problems and didn’t really digest the leaflet that came with the pills. I was pretty reluctant to take them, the idea of yet more pills, 6 weeks worth this time, filled me with dread, but what choice was there and the consultant had advised and issued them to me. Just 4 days into the medication I was feeling unwell, I had some muscle pains, nausea, headache and sleeping difficulty. I persevered as I wanted the UTI issue gone but by day 8 I was a wreck, my elbow was in agony, my legs and arms felt weak, my muscles hurt, I couldn’t sleep at all, nausea was coming in waves, my head hurt so I stopped taking them.
About 2 weeks later things had settled down and I felt generally better. What followed then was 6 months of pretty reasonable health, the odd aches, the odd pains and I still had sleep issues but I put that down to stress. During that time I walked in Scotland, rode my motorcycle miles, drove for hours in the car many times, did kayaking, sailing, swimming and generally was fairly active. Then out of the blue I developed a cold at the start of December 2015 and felt the usual pains including quite a bad headache. I rarely used Ibuprofen but this time I decided that I needed something as the paracetamol was not helping so I took one tablet and went to bed.
I woke up the next morning, headache still present and worse, my left calf muscle and leg were painful and tight. I scratched my head, tried to think if I had done anything physical the day before but no, nothing. So I ignored it and figured it would settle down. I carried on getting ready for Christmas which included hobbling around town getting gifts etc… I had a couple of weird “moments” during this time where I suddenly lost all strength and felt twice as heavy as normal. So much so that I ended up having to sit down for a while to recover. Again, I put it down to stress, lack of sleep and general fatigue.
So over Christmas the leg did not improve, insomnia was getting worse and I was feeling generally tired. I carried on as normal, even did a few walks although I had to hobble along a bit. Then by mid January and still no improvement I decided to go to the Doctor as I was concerned about the length of the pain and risk with clots. In the mean time I had started researching on line and looking for links to events that had happened to me over the previous months. Then I found it, a scenario that fitted my predicament completely.
The likely cause was adverse reactions to the Ciprofloxacin taken 6 months before but re-triggered by me taking the Ibuprofen, a drug reported by many to kick off a relapse of symptoms. At first I found it difficult to believe something I took that long ago could still cause me problems until I started to research the drugs themselves, how they work and the plethora of reports of ADRs including death and permanent nerve damage! The drug is part of the Fluoroquinolone family of drugs which are generally synthetic in nature and work by stopping DNA from replicating. They also contain Flourine, a known toxin and the more I’ve read about that the more I’m blown away that we use it anywhere.
My symptoms rapidly exploded not long after this and I developed a whole host of problems including burning skin sensations all over my body, muscle tightness, cramping, pain in joints and clicking joints all over, pins and needles in toes and fingers, pain behind eyes, digestive issues such as burning gut, headache, nausea, fatigue, muscle weakness, terrible insomnia and more. I checked on line and found dozens of blogs with almost identical stories, then support groups on social media such as Facebook, again with thousands of registered people going through the same. So many people have been left with debilitating ADRs that have left them housebound, unable to work and often their lives are permanently changed. I also found sites like Floxiehope which did at least tell stories of those who made it through to the other side.
So here I am, 3 months since my relapse if that’s the best way to describe it. What are my current symptoms?
• My left leg is still the same and my right leg is also suffering now
• My skin has aged with wrinkles and marks that have appeared
• My left eye is still dry and aching and has the odd sharp pain
• I get periodic burning skin issues
• Occasional pins and needles or pain in fingers or toes
• Insomnia is terrible and sleep is still nearly impossible
• My joints (I mean all of them) click and feel loose
• My limbs get tired really quickly from doing light work
• Stress, Anxiety and Depression are big issues with this
• I’ve lost 12Ib in weight in about 6 weeks, some likely to diet changes and some due to muscle loss as I’ve noticeably lost muscle and padding. CH
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(17) Cipro for infection after hysterectomy (DB):
It began 2 years ago with a hysterectomy. I was a fit and healthy 45 year old had my own business which was very busy, I enjoyed jogging, going to the gym, pubs and clubs most weekends.
I had my op in the February it didn't go great and I was in hospital for a week. I eventually went home to recover. 4 weeks later I got some sort of infection, I felt awful had a high temperature, blood in my urine. It was a weekend but I felt so ill I went to an out of hours doctor who was an arrogant tw*t. He upset me even more and I said I wasn't going to let him see me and I wanted another doctor. The receptionist had to come in to see the doctor with me in the end, he was French and everyone was complaining about his bed side manner.
Anyway he prescribed me cipro for a week. I went home and read the side effects but I thought that doctors knew best and started taken them. 3 days in I had this strange rash all over my back so I rang the doctors. I went to see a doctor and she said I had a fungal infection which I had never had before but I believed her.
Finished the course and felt better but 6 weeks later had another infection. Back to my doctor and she said I will prescribe you cipro again so took another week of it. Then gradually all my symptoms started - pins and needles all over my hands and feet arms and legs tired and irritable and constant pain and headaches.
Researched all my symptoms and cipro came up on search which scared me lots. To cut a long story short I told the doctors I never want cipro again. I have had antibiotics every 4-6 weeks. In the first year I've seen an arthritis specialist - that was ok, had camera in my bladder - that's ok, had hundreds of blood tests - they're ok, had thyroid scan and have a lump but not having it out until I feel perfect. I've had physio but they can't help, had a cat scan with contrast - that's ok, and just had MRI on my back and that's wear and tear.
At one stage I thought I was going to die, I've have never felt so low. I had a permanent temp between 37.4 and 38.4, blood in urine, so much pain in my back bottom left had side could hardly walk, I've put on 3 stone because all I could do is sit down. I couldn't stand for more than a couple of minutes and had this horrible feeling in my body day and night like some strange vibration, and lumps on my feet. It has been 2 years just gone. I've been on antibiotics for 6 months, and that has helped - I come off them in January, my temperature is now 37.3 and headaches are not as bad. Still can't walk far or stand for long but my symptoms are much better than before. I hope I haven't written too much. And if my story gives anyone a bit of hope then I'm glad I wrote it. I wish you all well. DB
(18) Cipro for UTI – doctor upped the dose (TH):
Basically I had a diagnosis of ME/CFS about 8 years ago now and was just left by the medical profession, as we often are. Was mostly house bound but was making some progress, then 3 years in I get a UTI and as it comes back the doctor switches me to Ciprofloxacin. I became really, really ill, having these attacks of severe symptoms and ended up in A&E a few times but they had no idea what to do and just sent me home, and the doctor upped my dose of Cipro.
After I eventually stopped it I've been left quite messed up, I have gone on to have a diagnosis of POTS (dysautonomia) and possibly MCAS (mast cell activation syndrome). I'm restless and agitated all the time and I seem to react to loads of things, from exercise, to medication, to noise, to light etc, with an adrenaline like reaction which takes days to calm down. If I keep triggering reactions I end up having the attacks of severe symptoms again. I can't tolerate any medication now, it triggers the reaction and I end up really over stimulated.
Six years ago I was diagnosed with Sjögren's syndrome and resultant myositis following increasingly frequent falls without any warning. A hip specialist did a muscle biopsy and found that the right hip dislocates suddenly and cannot be fixed as the muscle is too damaged. Since this diagnosis I have suffered five times from atrial fibrillation when taking an antibiotic so I avoid them. I have always been allergic to tetanus and penicillin and suffer reactions to all drugs, especially the five statins I was forced to take until the violent muscle reaction within a week made me stop. TH
(19) Cipro – it's a mild one (RV):
In November last year I had cystitis for a week and finally saw a GP who understood the reaction to antibios and said she would give me a mild one.........Ciprofloxacin. At 6.15 p.m. I took the first tablet with food as prescribed. At 8 p.m. a burning pain began under my lowest left rib which intensified until I could only stand upright and waves of nausea and perspiration alternated. I remained standing all night and at 9 a.m. my husband called an ambulance which rushed me to hospital. I thought may be it was pancreatitis.
They did a CT scan and x-Ray then decided that there was pneumonia in my left lung. I and my husband both asked the hospital to check on the previous 2013 chest x-ray which would show the same damage at the bottom of my left lung caused by a heart attack in 1991 when I was told that I died for three minutes and lost one fifth of my heart muscle and now had lung damage which would always show on x-rays. My husband brought five discharge papers from that hospital over five years which stated that I was admitted with AF as reaction to an antibiotic each time for tonsillitis, then an insect bite at an airport, then another insect bite at home, cystitis and another infection.
A cannula was wrongly fitted and Ciprofloxacin was pumped into my right arm. I kept telling nurses that the fluid was dripping off my arm and later that day a swelling the size of an orange appeared above my elbow. For three days I was fitted with ten new cannula and given two antibiotics which they said were sisters of Ciprofloxin and then AF set in which finally made them take notice of my complaints - swollen sore arm, blurred vision, tingling in fingers and toes, intermittent sweating and high temperature fluctuating when antibio administered. Pain under left rib finally disappeared after fifth day.
Ciprofloxacin was alternated with Teicoplanin and another antibio. On one day two administered together instead of four hours apart. For one day I was left alone while they consulted a microbiologist who unfortunately finally came up with Levofloxacin and when I read it up in my iPad it said not for people with muscular problems so I refused it. Three more days of antibios into cannula which actually did their job and I could no longer walk to the loo and shower, I discharged myself on the ninth day and my husband took me home as I was heartily sick of my treatment, for which a doctor did apologise, and of constantly being asked if I had any pneumonia symptoms yet.
Four days later I was in the GP surgery with bright red swollen lump above elbow in right arm, sweating despite feeling frozen and shivering and nausea. GP phoned blue light ambulance and I was back in hospital with sepsis. They were pleased they could pursue pneumonia with antibios. After 21 days I was given a lung puncture which proved there was no infection whatsoever and then moved to isolation supposedly with para flu. 23 days, 25 cannula and countless doses of antibios which caused AF every time and I was finally sent home without a care plan and incapable of even holding a cup. I had lost 21 lbs in weight and my right leg was so swollen the anticoag clinic called it a tree trunk which was too big for a support stocking of any kind and had a blood clot half way down the lower leg. Six weeks of four carers a day and finally I could perform ablutions and dress myself. After three months I could walk without a frame, and on my first accompanied excursion out and using a walker I fell backwards without warning on to concrete and sustained severe concussion. The five people who had surrounded me in case I fell were too surprised to catch me!
I went shopping in Bluewater the day before I was taken into hospital with pain under the lowest left rib. I walked with a walker for support. I cross-stitched, knitted and crochet and did tapestry and jigsaw puzzles. I used a walking stick outdoors for leverage up steps. I did all household chores and cooked every day as well as being carer for my husband who has had ME for 36 years.
Since coming home, and falling over the threshold as my leg would not go over it, I cannot lift a kettle to fill a teapot neither can I pour tea made by someone else. My legs will not walk as they used to and I have to use walking sticks to get round the house and on to the stair lift. I have no balance whatsoever and my vision is still blurred. I cannot cook meals as my hands will not lift anything and my fingers cannot manipulate or hold tools. I can no longer care for my husband and he does his best to now care for me.
To read about Cipro Toxicity has been a revelation. I had supposed that it was a rapid deterioration of the myositis, despite being assured by GPs it was not the case. No-one has ever mentioned the Ciprofloxacin debacle. RV
Then this update and diary, nearly 12 months later:
Since being so disabled after arrival home last December 2nd, I have used an iPad page to write in each improvement and it now reads as surprisingly pathetic - although each achievement was a triumph indeed at the time. For instance, on Boxing Day I put one leg into my undies before falling off the bed and it was 27th January when I put undies on myself. On 14th February I did up one hook of my two-hook bra by myself. It was on 4th April that I managed to do both up by myself, and there are still odd days when I have to stop trying and ask my husband to do it. However, I never make a note of failures, only success; I do not consciously have goals, I just want to return to how I was on 8th November 2015.
Having tried on my shoes twice a week all year, it was fantastic to actually wear them last Thursday. I have exceptionally high arches and when young always walked on tiptoe! When 16 I discovered high heels and needed 3.5 inch heels at least to walk comfortably. Bliss. I have never owned flat shoes since so this year has caused a painful back walking on 1.5 inch wedge slippers or no shoes at all. You can imagine my delight to still be able to wear my heels after so long without them.
2? weeks later: This week I have managed to turn round in four moves without support and to swing back upright by moving one foot sideways as I fell backwards. Huge progress for me even if it sounds pathetically normal to most. RV.
(20) Cipro as a pre-emptive measure (RR):
5 years ago I was diagnosed with Hypogammaglobulinaemia ( a right mouthful I know) but basically means I don't make enough white blood cells, which help fight against infections, thus I have a low immune system. At the time as I'd been admitted to hospital 8 times with pneumonia (now 15 times to date) I was referred to a specialist in Cardiff University Hospital.
This specialist prescribed Ciprofloxacin 750 mg to fight any chest infections and to keep taking them as a pre-emptive measure. Initially the tablets did clear up the chest infection relatively quickly which I was happy about. Fortunately I decided not to take them as a pre-emptive measure as I choose not to take pills unnecessarily.
However, even though I was taking them generally only when I'd been hospitalised, I started to get some pretty nasty side affects. First I acquired plantar fasciitis (tendinitis at the bottom of the foot).
On my left foot, then weeks later both feet, which was absolute agony for the first few hours every day, and as bad after standing for an hour or so. As Manager of a family owned hotel it meant long hours day in day out on my feet. I was sent to a chiropodist to receive two insoles for my shoes to help with the complaint.
Next, I started getting trouble with my face, which consisted of massive cold sore type blisters on my lips which felt like they were on fire (I never get cold sores), redness around my eyes to the point they looked like they were bleeding, also around my nose, and red blotchy welts all over my face.
When I confronted the nurse at my specialist's she told me that it was all from an onslaught of a chest infection I had coming on and that I should keep taking the Ciprofloxacin daily to help fight it. After a few days I said enough was enough and point blank refused to take anymore. It wasn't until I showed the specialist the short videos I'd made that he claimed that I may well be allergic to it and that I should stop taking it............. NO SHIT!
So here I am 2 years later on, and my feet are back to normal, I don't get any of the facial disfigurements but unfortunately I do still have infections which obviously brings on coughing. This often results in popping rib cartilage, broken ribs and displaced vertebrae. Just last year while working the bar in the afternoon, I coughed/sneezed, and with that I broke 2 ribs, dislocated 3 ribs, and knocked 7 vertebrae out of place, 2 of which were in my neck! All of which I can only put down to the destruction of cartilage caused by the Cipro.
RR
(21) Cipro, then Ofloxacin, for possible epydidymitis (AD):
I'm 50 next year, and a self employed tree surgeon and carpenter. I spent 9 years in the Army as a physical training instructor.
At the beginning of October last year I went to the out of hours and was given Ciprofloxacin for possible epididymitis. I took 3 tablets (500mg twice a day) and woke at 2am with a sensation of adrenaline rising up my legs and a feeling of panic and anxiety. I had never suffered from anxiety before this. I rang my doctor's and spoke to a GP who was pretty dismissive of my symptoms and certainly didn't think it was the antibiotics. She did agree to give me something else and gave me Ofloxacin. I took these for about 4 days but felt awful; anxious, panicky, crying, so stopped these too and my wife took me to the doctors. The GP (a different one) said he thought I had developed anxiety, saying it could be to do with my time in the Army (I served in Northern Ireland) or memories from when I had tried to resuscitate my dad - both of these had been years ago and I had never had flashbacks before. He prescribed some diazepam (2mgs 3 times a day if I needed it).
Within 2 days my wife had to take me to A&E as I was in a right state, the diazepam wasn't helping, I couldn't sleep, I was continuously anxious, having panic attacks and felt at the end of my tether. The A&E Doctor prescribed propranolol and upped the diazepam to 5mgs 3 times a day as he said 2mgs wouldn't have much effect as I'm 6 foot tall and weigh 15 stones. He asked for a mental health nurse to see me as he thought it was anxiety too. We saw her at the A&E & she said she would refer me to the community mental health team. The propranolol and diazepam worked initially but I was so tired during the day I could hardly get out of the chair. I'd go to bed but would then lie awake all night. This went on for about 5 days and nights. I was beginning to feel like it would never end.
In the early hours of the next morning my wife rang the number given to us by the mental health nurse as she was so concerned. I spoke to the crisis team who visited me at home but concluded I did not have a mental health problem and told me to go back to the doctors again. This was a relief (that I didn't have a mental illness) but did not stop the feelings of anxiety and panic. The GP prescribed zopiclone and I did manage to get a few nights sleep but was still so tired during the day. He agreed to reduce the propranolol as it seemed to be this that was making me so tired.
My wife works as a medical secretary in a GP surgery (not ours) and she spoke to the community psychiatric nurse who is attached to the surgery and who suggested I be referred to the psychology service. (The psychiatric service said they were not going to see me as the crisis team had decided I did not have a mental health problem). She then spoke to the IAPT (psychology) department at our local hospital and they said if we got our GP to send a referral letter they would do a telephone assessment with me. I spoke to a lady and after I explained everything she said she thought it could be the antibiotics I had taken. We went back to the doctors (saw a different one again - I think I've seen every GP in the practice over the last 7 months!) and told them what the IAPT lady had said. He hadn't heard of anyone getting side effects from Ciprofloxacin (or Ofloxacin as we now know!).
As my symptoms weren't improving and by this time I was feeling very down (had not worked for 3 months) I asked if antidepressants might help. The GP thought it was worth a try and started me on sertraline 50mgs once daily. These did start to help but I was getting some of the known side effects, especially night sweats & chest pain, but I persevered as they were making me feel a bit better but I was still not sleeping more than 4 hours a night and was exhausted (as was my wife).
A week before Christmas my mom paid for me to see a private psychiatrist, who is also a pharmacologist. She had treated 2 other people with my symptoms (after taking Ciprofloxacin) and diagnosed me with severe depression caused by Quinolone Toxicity. She increased the sertraline to 100mg in the morning and started me on mirtazipine 15mgs at night (she said mirtazipine, as well as being an antidepressant, also has a useful side effect of causing drowsiness). I began to feel better within 2-3 days. My sleep pattern improved and I felt more like me. I came off the diazepam, only needing to take one when I was feeling anxious (and when none of the techniques I'd learnt worked). The psychiatrist has had to increase the mirtazipine to 30mgs and the sertraline to 150mgs as I dipped a bit about 2 months ago but now I have weeks (4 weeks is the longest so far) where I feel really well. I do get a weird sensation across the back of my neck and shoulders quite a bit but can usually fight this off. I had a bad week last week, I was fine when I went to bed but woke up feeling anxious and even though I tried to cope with it I had to take a diazepam in the afternoon. I woke up another morning last week feeling tearful and spent the whole day crying, I have no idea why. I'm better again today and hope I'm on another stretch of feeling back to normal. That's the frustrating bit, I can go to bed feeling really well then wake up feeling awful, there is no pattern to it at all. AD
(22) Given Cipro for trip to India – just in case (LH):
My story begins at Christmas 2011. Amid great excitement I opened my present from my daughter and my husband. A trip to India to see tigers in the wild. I couldn't believe it! I was to go with my daughter and her friend. My husband had never wanted to go India but I had always wanted to since the age of three, when I was dressed in a sari for a Coronation Party! India held a fascination for me throughout my childhood and beyond.
Our holiday was booked for February and I visited my GP and had the necessary jabs. I also had a basic medical kit to take as we were traveling through very remote areas. I had been seeing my doctor about pain in my feet for many months and saw him just before the trip to ask for an MRI scan. I was sure it was tendinitis but he didn't agree. He suggested an X-ray on my return. As I was leaving he said the words that changed my life..."I will give you a prescription for Ciprofloxacin to take to India….just in case. They are very good for traveler's tummy bugs and can be used for other infections like chest infections or UTI's."
We had a wonderful time in India with fabulous tiger sightings. Towards the end of our trip I was suffering from a UTI. We had a long road trip ahead so I started to take the Cipro, as indicated in the information sheet. Three days later, as I was walking round the Taj Mahal, I thought I had been shot in the foot. Sudden excruciating pain and rapid swelling. I limped back to the coach and remained in our hotel until we left for the flight home. I read the long list of side effects and discovered that Cipro should not be given to women over 60 or anyone suffering with tendon problems because they could cause tendon ruptures. I stopped taking them immediately but the damage was done. Little did I know this was the tip of the iceberg.
My GP agreed that Cipro was probably the cause and said he should have listened to me re the tendonitis. What followed was horrendous. I was referred to an orthopaedic surgeon who painted a very black picture. He said the right posterior tibial tendon was ruptured and the left was torn. He suggested Physio but warned that surgery was probable if the Physio was not successful. The operation would involve drilling a hole in the navicular bone and 'stealing' the tendon that operates the toes to replace the damaged PTT. The heel would be removed and repositioned and the Achilles tendon lengthened. One foot would be done followed by the other a year later. The prognosis was guarded and the transferred tendon might only last for ten years. Very strong pain relief would be required and the foot would be in a cast for some weeks. I was also referred to a podiatrist for orthotic insoles.
Unfortunately neither the surgeon or the physio had any previous experience of tendon rupture caused by Quinolones. The physiotherapy was aggressive, extremely painful and made matters worse. The first operation was arranged for November. We used our medical insurance. I was discharged the day after the op, which was a Friday. Apparently the private hospital was not fully staffed over the weekend. I had been overdosed with morphine in recovery and vomited all the way home. The weekend was horrendous with no pain relief and no support. I was also suffering from many other Quinolone related symptoms and I had developed an intolerance to painkillers. I had to suffer months of agony with nothing to help the pain. My surgeon was mystified and really didn't understand the 'symptom link' to Cipro, at one point suggesting I had Complex Regional Pain Syndome. I made the mistake of Googling this which frightened me to death. I was desperately worried for six weeks until my podiatrist referred me to a Pain Specialist. After several visits and MRI scans he confirmed that the pain was not CRPS but caused by inflammation from the adverse reaction to Cipro. I did not return to the surgeon for the second operation. My faith in the medical profession had been shattered.
My husband encouraged me to seek legal advice re compensation. My continuing immobility has proved very costly. Prior to Cipro I was riding our competition horses, walking my dogs and lead a very active out-door life. I also cared for my elderly Mother and Aunt and Uncle. We have had to pay people to take over these roles. We were lucky to find a brilliant lawyer. He decided we had a case against my GP. I am delighted to say we received an out of court settlement last month after a four year battle. There were times when I just wanted to give up but my husband, daughter and my lawyer were tenacious and the relief has been overwhelming.
I continue to have good days and bad days. My mobility is compromised and I frequently have to use a mobility scooter. I can only support my beloved horses from the sidelines now. I miss riding terribly. It had always been my therapy and I had ridden almost every day of my life. I have learnt to manage the pain. I have recently developed an intolerance to alcohol so have stopped drinking. I am sleeping better and the night cramps have diminished. The general pain never goes and I have other related problems, too many to mention. It has been difficult to tell my story, but I hope it will help spread awareness. No one should have to suffer like this because they have taken a widely prescribed antibiotic. LH
(23) My four-year old son given Cipro and Ibuprofen (CM):
My son, 4 years old, was for some reason prescribed Ciproxin suspension for a suspected ear infection (he had symptoms for 8 days, including fever, and he can't take penicillin). His ear wasn't overly red in examination but he was presenting with ear pain. He took a 7 day course. After one dose he was vomiting and having diarrhoea. I reported to my GP, who told me to continue until the antibiotic was completed. He started getting head pain and sore ankles, arm pits and knees, dizzy and seeing yellow spots. Still I was told to keep giving it to him. Now he has stopped it, and finished the complete course, he's still not getting better.
I didn't read the information leaflet, which I should have, and which clearly stated this medicine should not be given to people under the age of 18, except in extreme and highly supervised cases. I had blind trust in my GP, which I feel foolish about now. Why this was given for an ear infection I will never know.
Regarding the ankles, I'm not sure exactly where the pain is located, as he isn't great at explaining in detail (4 year old!). He seems to be sore when he stands up or tries to climb on to bed or sofa. It's like the pressure from standing on them is hurting, but not if I touch them and ask, "is this sore?" Also if I try to dress / undress him he is screaming with sore armpits etc. He's too weak and unfocused to dress himself at the minute.
His main symptoms now are fluctuating temperature, sometimes running a fever and sometimes not! Dizziness, general lethargy and tiredness, sore head, light and sound sensitive, extremely pale / green, and black under eyes. The whites of his eyes don't look yellow. I guess these symptoms could be from "just" an infection, which is what I'm now being told by GP and paediatrician. They have scoffed at my suggestion that is could be related to Ciproxin.
I took him to A&E on Saturday night - I eventually read the leaflet for meds, and I was alarmed that it said to report to A&E if symptoms like his presented. His white cell count was very high, but cultures tests and urine came back clear. So obviously he still has an infection, but apparently his chest, throat and ears looked fine?!
The diarrhoea has stopped and instead he hasn't had a bowel movement in 3 days! His appetite is low, but was worse while he was actually taking the medicine. Stomach is sore but that could be from the lack of bowel movement!
The GP told me to give ibuprofen 3 times a day during the 7 day course. Of course I've now read that is also contraindicated. Sigh! Her logic was that only an anti-inflammatory will really help with ear pain. I don't think she knew anything about Ciproxin! She seemed to look up in a book which antibiotic to give when I reminded her he couldn't take penicillin. CM
(24) Bed-Bound and Bankrupt after Cipro (AP):
I was floxed four months ago by five cipro pills, the symptom list is too long to write but I am now bed bound and can just about walk to the bathroom etc. I would describe myself as severely floxed.
I am married with a five year daughter and she is the only reason I now cling onto life and survival. Most of my friends and family have abandoned me as they think I am a mental case and should be locked up.
I had a mitochondria function test recently which shows 28% damage plus other detox stuff in my liver not working. I hope to get some advice from UK floxies as my GP and rheumatologist are just about abandoning me. I especially need advice on disability as I have lost the capacity to work.
I had a stomach infection and was given cipro 500mg x two a day, second day I felt burning in my arms and legs and couldn't breath. They took me straight off it and I was in hospital for a week on IV Augmentin then at home for 3 weeks on the same.
I still couldn't breathe and felt so weak couldn't move, I kept going back to doctors with kidney pain and nausea then they put me back on cipro – just one tablet and the bomb went off.
I knew something was wrong and started searching the net but was in denial. Nausea lifted and I went back to work but felt very wrong, I came home one day and had to crawl into the house as my legs gave way and I was in pain.
I felt OK one day and cut the grass and walked to the shops, next day my chest had bruises and what felt like muscles tears all over it.
This continued for weeks and I had an x Ray on my spine showing compound fracture of spine but I'd not had any accident. My ankles started hurting then I had strange lumps in my leg muscles almost like at the bottom layer of my skin which had swelled up. Then I started having pins and needles in my bladder and abdomen which has spread all over my body from head to toe. I can just about walk but in terrible pain, my arms are now the same as my legs with big bruises and what looks like ruptures. My eyeballs hurt and I can't sleep for more that 3-4 hours.
My GP sent me to a rheumatologist who said cipro has caused the tendon pain but wouldn't admit to anything else. My GP is trying to help but doesn't know what to do as every day I get worse. I am on all the supplements and diets and having ozone IV but nothing helps. I have social services involved and my doctor is trying to help but a bit lost. My friends look at me and think I'm mental as I don't actually look to ill. Some friends and family now sort of get it but don't quite know how much pain I'm in. My wife is divorcing me – she thinks I'm just a whiner and making it all up.
I am unsure what to do to heal - nothing seems to work, the muscle wasting is bad but the tissue damage is weird like nothing I've experienced - it seems to be the lower layer of skin that's inflamed. A.P.
(25) Third Cipro prescription in 12 months (DU):
I am 57 years old. At the beginning of this month (October 2016) I was prescribed Cipro for Prostatitis 500mg twice a day. I have had similar prescriptions over a number of years, and this is the third within 12 months. The most recent prior being in early March this year.
Before the prostatitis I have been suffering from back pain and sciatica type pain/numbness in my right leg also. I am awaiting an MRI scan of spine and pelvis (think disc issue is suspected by GP).
Within first few days of this latest course of Cipro I developed:
a vibrating/shaking sensation, throughout my body. At first this was intermittent, only noticeable at rest, but has continued to progress and become an almost constant companion.
insomnia (very sudden and distinct onset)
tinnitus
night sweats
burning pain in both thighs when at rest, pain in both calf muscles and feeling of extreme tightness and stiffness in leg tendons and/or muscles throughout my legs.
I stopped taking the Cipro after 9 days, but the symptoms have continued, and are getting progressively worse. (Leg burning and vibrations/tremors particularly – very difficult currently). I have also now developed slight tingling in hands.
GP has not witnessed anything like this from Cipro but has sent me for blood test to check for inflammation, and talked of Neurologist referral if he cannot make progress.
I am beginning to suspect that some of the issues I was already witnessing (back/hip pain and leg numbness) may well be linked to quinolone toxicity. I have also ruptured my Achilles in the past, but cannot recall whether this was before, or after, my first course of Cipro.
I hope that this all makes sense. I am desperately trying to come to terms with what has/is happening to me, and what that means. I found the posts on the Patient.info site helpful, and hope to share and find more information via this group. D.U.
(26) Cipro with Ibuprofen for suspected epididymitis (PC):
I'm male 47 years young. In April 2016 I had some pain in my "right" testicle which seemed to come and go for about a week before becoming constant. I was due to go on holiday so went to see my GP on the Wednesday before I went to Spain. He examined me then prescribed Ciprofloxacin 500mg twice daily for 2weeks and advised me to take a multi vitamin with them, and ibuprofen for the pain as and when needed. He thought it might be epididymitis. The only question I asked him was can I have alcohol with them as I was going to Spain for 10 days. He joked "yes that's fine just take them with water!" I did as he said taking them morning and night with a multi vitamin (in case I had, in his words, "loose stools")
As the days passed, sitting on sunloungers sipping beers with my family, I found it increasingly difficult to stand up/sit down due to feeling stiff in my ankles and hamstrings. I really didn't give it much thought to start with as I thought it was from all the sitting around. I'm on my feet all day when working so sitting around doing nothing is unusual for me and really the purpose of the holiday! First thing I really noticed was tightening of the Achilles tendons and having to walk with my ankles "stuck" at 90 degrees!
After about a week it started to get worse, awkward to walk and more painful with the stiffness and pain centred in my Achilles tendons and the base of my right foot. By now my family were asking what was the matter as they could see I was in pain (I was doing my best to cover it up so not to spoil everyone's holiday). I was glad to get on the plane home!
During the flight I had new additional pains that felt like being stabbed inside the middle of my shinbone starting at the mid point and travelling down to my ankles. These would take my breath away to start with and would come every hour or so and only lasted about 15/20 seconds but it felt a lot longer !
I didn't take much ibuprofen at all, only before bed in the hope I may get some sleep... as I lay in bed in the quiet the pain seemed to increase as did my tinnitus (had it for years but not this loud) and I would get a numbness and tingling around my eyes and in my upper cheeks.
Once home I started to feel a little better apart from my right testicle which was exactly as it was before so I booked into the doctor's again. He gave me another 2 weeks of the same!!
This is when things really started to turn. Within 2 or 3 days I was struggling to get out of bed it seemed every joint in my body was hurting, I was in a real state.
The only way I can describe it was going to bed as a 47 year old and waking up as a 97 year old! I got an emergency appointment to see my GP again (amazing how much trust we put in them is it not !!). He told me to stop taking the Cipro and that my joints would be back to normal in a week or so! He also told me he didn't know what to suggest about my testicle so booked me in for a scan and told me to attend a walk-in GUM clinic (as they should be more specialised in this type of thing!).
The guy at the GUM clinic asked if I had been prescribed anything from my GP. When I told him Ciprofloxacin he looked at me and said in a surprised voice "REALLY? We don't prescribe that any more!" Strange what I do remember but the penny still had not dropped for me. He did full bloods and gave me Doxycycline.
Over the next few weeks my pains were coming and going, now mainly in my hips, knees, Achillies, left shoulder and left elbow. I was managing to go to work, spending as much time as I could sitting and getting others to do more physical work for me..with my hips I was walking like I had shit myself (sorry about that!). To be honest, people were telling to take time off as I looked terrible from the lack of sleep and constant pain, but I was too frightened. I honestly thought if I stopped moving I may never walk again. I was losing muscle at an alarming rate so I started to think I had cancer. My appetite was still good so I just ate more and more to try to combat the muscle loss. My bloods came back - no cancer (great news!) and all other tests from GUM were negative also. I had my scan and they found a small lump on my "left" testicle (!) but said it was nothing to worry about. Within 2 weeks the testicle pain was gone...this was weeks after the Doxycycline was finished. To this day we have no idea what the pain was caused by or why it went. To me that is of minor consequence to the problems I'm having now.
I had by now got out the leaflet from the Cipro to see that I should avoid sunlight !!! My GP gave me these to go and sit in the sun with !!! It also showed up the danger to tendons and the Achillies in particular so I was now convinced these were the source of my joint problems. I Googled Ciprofloxacin reactions or something similar...... the list of symptoms I saw matched exactly what I was going through...
I cut and pasted them to a text and sent them to my wife with no other info attached, just to make sure I wasn't just seeing what I wanted to. She rang immediately to confirm my thoughts with the words “Brilliant - now that we know what it is, we can fix it.....!”
Now, months down the road I seem to be stuck at the same point:
constant joint pain in hips and Achilles
stabbing pains in shin bones
constant pain in both big toes and both thumbs
mild panic attacks (waking in the night crying with irregular heart beats) never had anything like that before
facial twitches
various muscle twitches mainly in my quads and left tricep
I feel weak
my memory is shocking I get very frustrated as I can't remember names of people I see every day. I just call everyone "mate" now for ease (causing a few issues at home).
I have no energy but that may well be attributed to my lack of sleep
I refuse to take any form of pain killers or go back to see my GP much to my wife's distress
I cannot go for a walk, ride my bike or go to the gym - not good for someone who was very active.
Constipation, maybe from the stress of it all, but improved now by use of probiotics
The guys at work are getting fed up with constantly helping me out because I'm not getting my work done as my concentration is so poor
On the upside:
Acupuncture has helped me a great deal, how or why I have no idea nor do I care as it has improved my pain scale from an 8 to a 4\5 (but for me the costs are high so I'm leaving it at the 3 sessions I've had so far to see what happens now .. I can always go back. I was very surprised to be honest as I wasn't really a believer but I was prepared to try anything at that time
I've been taking magnesium citrate for a few weeks this seems to have helped with my stiffness in my ankles. I am being methodical in my approach with supplements as I was a "sporty" person into nutrition anyway.
I am managing to still work but do nothing else as I'm shattered after what would normally have been an easy day.
What to do now ?
My physical problems - I can presently deal with good and bad days in the hope I will, in time, rid my body of this shit!
I am really struggling with my mental health (never had a problem before). When I am in a corridor or such space I feel I'm watching myself from the 3rd person perspective. Simple tasks seem almost impossible such as recording programs on tv - I can't remember how to do it! It should be funny but it's really worse than the pain.
I have re-read that and it really makes no sense and I think I've missed loads out or got things out of order but I think you should be able to get the gist. I had not mentioned my mental condition originally - my memory is shot and it's taken me an hour to write two paragraphs! I feel 50% better physically but my life as I know it has changed massively. P. C.
(27) Every doctor I've seen has said to use Ibuprofen (DSN):
My problems started in early November whilst at work, I suddenly had a strong pain behind my lower left rib. It's still ongoing, several doctors seen and a trip to A&E, had a CT scan and X-rays, unfortunately no answers. On December 1st (2016) a doctor found some blood in a urine test which is still ongoing along with the pain. I was then also diagnosed as having a testicle infection but it wasn't very bad, and was prescribed ciprofloxacin 2x500mg a day. I finished that course but the blood was still present in the urine so I was given a second course of the same dose. Whilst taking these I had stomach aches which moved into my chest, very painful
to breathe, went to A&E again and had X-rays, nothing found. I was then prescribed Naproxen Anti-inflammitary, at the time I didn't know not to use Anti-inflammitaries or NSAIDS! A week or so later my right arm was hurting on straightening and quite sensitive to touch, I thought it was from all the blood tests I'd had but still very painful now. My left Achilles was agony for a week, unable to move my foot or walk. It's now quite a lot better and can walk around the house with built up soles, but still painful.
Every doctor I've seen has said to use Ibuprofen for the pain due to swelling. There is no swelling, I'm very thin build, been 9 and a half stone for a long time and everything visually looks normal. Was prescribed Voltarol gel too - I used it once before I realised I shouldn't. I'm taking multivitamins and magnesium citrate, using magnesium oil and cream, Epsom salts in the bath and eating a lot of kale and fruit and vegetables. Also have cut out Gluten this week to see if my stomach pain improves, possibly coeliac disease? Have to see a liver specialist soon as my blood tests have shown raising levels too. Pleased I found the group, nice to meet others in similar situations. Thanks for listening.. I hope everyone is able to get better as soon as possible.
DSN
(28) Lucky I only took 11 pills (LB):
I was given 52 pills of cipro 500mg for suspected prostatitis and I was 'lucky' I only took 11.
The big problem with cipro is the delayed reaction, mine was around a month after the last pill - this should be a big thing on the label. If a doctor had told me - or even just believed me - that I was having a bad reaction and it's well known that most people could suffer quite badly for while and signed me off work for some time, I may have handled it better in my head. For the next 4 months I felt like I had been in a car crash every morning when I woke up.
Aged 28, I had to move back home from my rented flat near work in month 3 as I didn't feel right at all. Twitches and random shooting pains all over.. burning knees... flashes in eyes..felt like eyes would burst ..bad depersonalisation and sleepless nights. The symptoms were coming full force and that together with no help from the medical world put me in a very dark place. I no longer trust the medical world or system. I had too many symptoms to list but here are some:- severe crushing feeling in skull and eyes, blurry vision, constant feeling of fear, suicide thoughts, bruising on calves, Achilles pain, random nerve pain all over, severe anxiety and stress and ptsd and loss of a three week holiday which I had worked hard for - I spent it in bed crying like a baby because it affected my brain. The worst part was no doctor believing me.
I believe there is a massive misunderstanding in the medical world with urologists confusing an actual infection with common pelvic pain syndrome and this needs to be addressed. In the Facebook groups I have seen many young men with the same condition as me and have used certain relaxing techniques to realign the pelvis and get rid of all the symptoms that can match prostatitis.
I now know that pharma companies are all about profit and could not give a damn about true health. I was lucky that I was a strong guy at 28 who had family support during this ordeal which was very bad for 8 months and only now after 2-3 years I have overcome the 11 small pills I never needed. I feel sorry for anyone who doesn't have that support while they heal. A drug given out so freely (well, I paid £9 for my trip to hell) is not meant to maim you for months on end. Lucky I'm well enough now to work hard and be busy and continue to not take anything for granted... I try not think about this crap if can though I do try and pop by the group now and then to encourage any recent people that have been poisoned.
LB
(29) All my joints were seizing up (SM):
I went to my docs in late December (2016) as I had been sleeping for 3 or 4 hours then would wake with flank pain in my kidneys. I also had uti-like symptoms. As I'm a mental health nurse I had access to our surgery and took a dipstick test of my urine. I took a high reading for leucocytes (white blood cells) which would indicate a kidney type infection. I then went to my doctor that day and he too got that result on the dipstick.
I'd already had trimethoprim however I don't think this drug worked to effect and so my doctor prescribed me a 10 tablet (I think) course of cipro. I also think they were 500mg tabs but can't remember to be 100% certain. I also got blood work done and a urine culture, these all came back fine, although they were taken 2 days into treatment of cipro so perhaps that's why. I was rarely at the doctors before all this.
My uti symptoms did gradually get better, however on the 2nd last dose of cipro I felt very odd, had suicidal type thoughts, all my joints were seizing up and my head felt dead hollow when washing my hair in shower, it was very very frightening. I finished the course, and then maybe a week or so later started experiencing pain in my left knee.
That is the main issue I am left with now but certainly don't feel 100% me either. I have inflammation on my knee since, and whilst its gone down somewhat, it's still very sore. An x-ray showed fluid, I'm going to ask for an mri scan. I have been in consultation since with my doctor and have recently had further blood tests and I'm going back to see him soon. On a positive note he didn't dismiss that cipro could have done this. I said with inflammation like this I'd like to think I'd have known what caused it but there was no other incident or cause in my mind other than floxing. I wish there were - it would make recovery easier!
SM
(30) In shock after finding out about Cipro (KK):
I have a bit of a complicated medical history, so where to start. I'm waiting for confirmation but think I was probably given Cipro on a number of occasions in the past; I was born with duplex kidneys and reflux so suffered numerous uti's when younger. I was diagnosed with left sided Achilles tendinitis in 2007 and would get referred for steroid injections yearly. In April last year I underwent discectomy L5/S1 for disc prolapse and nerve compression(diagnosed with osteoarthritis of spine age 38 in 2007), unfortunately my disc had calcified and I sustained a dural tear at surgery and was left with nerve damage which resulted in numbness in the left foot.
I was given a weeks course of Cipro 500mg by my GP in September (2016) for suspected renal colic. I have a 20+ year history of working as a nurse and have never heard of associated Achilles problems with Cipro. Although it was well documented on my history that I suffered from left sided Achilles tendinitis (I had two steroid injections in the prev 18/12) my GP never mentioned heightened risk so I took the course. I had a flair up within a week on both Achilles and have severe problems with pain and burning since making mobilising very difficult. I was in agony but thought it had affected both ankles because of my gait following the spinal surgery as I wasn't aware of Cipro risk. I got referred back for uss steroid injections, this time for both ankles. When they scanned I was told they couldn't inject as I had developed insertional Achilles tedonitis in both ankles with calcification and they could no longer administer steroid injections as I was at risk of rupturing (they couldn't understand why it had changed presentation).
As mentioned I wasn't aware of Cipro link so looked into alternate therapy as I couldn't face further surgery. I was referred for ultrasonic treatment and underwent 3x treatments over a 6/52 period. The treatment was agony, I even took something to bit on whilst having treatment as I so wanted it to work. This treatment works by damaging the Achilles and thus increasing the blood supply which aids healing, with hindsight as Cipro affects the healing process, this treatment was never going to work and has just made things much worse. I still work in the nhs, no longer nursing but I am a service manager in operating theatres. Work and being busy is the only way I cope with the pain, when I am off I can't cope with the pain. My present pain means I can't climb stairs, and have severe burning when resting and in bed. I have spoken to a pain consultant and he has suggested lidocaine patches applied topically for 11 hours a day and pregabalin for the burning. I am not coping with the pain and lack of sleep at the minute and even oramorph at night is not killing the pain.
I also wonder if the back problems relate to previous Cipro! Sorry if this sounds like I'm waffling, as well as working full time I also have a mum with Alzheimer's who I visit daily and I am absolutely knackered. It may seem strange that I am working full time, it's my coping mechanism and believe it or not my pain threshold is usually very high, when I had prolapsed discs compressing my sciatic nerve I didn't have a day off from work! Also I need the salary from work as my son is at uni.
I must admit I'm still in shock after finding out about being floxed. I phoned my pharmacist this week to check dates of Cipro, when I asked he said “oh God, they're not saying your Achilles problems are related to Cipro are they? It's so rare and you can't be that unlucky”! When I got my referral for my pain appointment my medical history clearly lists 3 x flare ups of Achilles tendinitis and steroid injections to treat it. I can't believe my GP prescribed Cipro without warning me of the risks. I've spoken to a number of nursing colleagues and none had heard of the risks, it's shocking!! However, the orthopaedic consultants said most of the Achilles ruptures in emergency cases are after taking Cipro.
KK
(31) After Cipro, all hell broke loose with my central nervous system:
I had not long finished writing my finals for my Maths degree and was looking forward to getting my results when I felt the signs of a urinary tract infection on the 20th of September. The next day, I tried drinking lots of fluids but by the following evening I had a fever and bad back pain.
I remembered that I had a course of antibiotics prescribed to me a year previously by my GP in Doha, Qatar, where my husband and I had lived for a year. These were meant to be a cephalosporin antibiotic as I’d told the GP that I’d rather not take Ciprofloxacin, which shockingly seemed to be her go-to first line treatment. I’d had it three times previously in the UK and had no issues but the third time I took it I felt it made me anxious. My UK GP dismissed this as a likelihood but I googled and that was when I realised the catastrophic effects it can have, and resolved not to take it again unless there were no alternatives.
So on the night of the 21st I took what I thought was my first cephalosporin antibiotic, and woke up feeling much better. I was also taking ibuprofen for the pain. I took it for the next two days, then on the third day, so after my sixth tablet, I had a terrible and very strange anxiety attack. As I was walking to the bus, I realised that my skin felt incredibly sensitive and I could feel every strand of my clothing. The traffic in my quiet suburb sounded like a motorway. I felt terribly anxious, but got on the bus. The binging bell sounded completely amplified and the sun felt like it was burning me.
I felt better later that day but at that point I checked my antibiotics, and realised to my horror that I had been taking Ciprofloxacin 500mg. I immediately stopped, and didn’t take the final four tablets. I desperately hoped that the anxiety attack was due to it still being in my system and that no further harm was done, but sadly that wasn’t the case. My UTI had however resolved.
The following day, 25th September, I got my results. I had achieved a first, which was a wonderful surprise as I’d expected to get a 2.1 and had achieved a distinction for my final exam. It should have been one of the happiest moments of my life but I felt strangely flat.
On the 26th of September, when I was showering I noticed that my palms were burning. At this point I started to get really scared. However I headed into town to celebrate my degree result with my husband. Instead of the planned dinner out, I had a terrible anxiety attack that was like nothing I’ve ever felt before as it was tinged with a terrible depression-type feeling as well. We had to come home where it escalated into a panic attack so bad I was shaking hard all over. At that point I took a diazepam and managed to calm down enough to go to bed.
The next few days I was okay mentally but as well as the burning in my palms, I started noticing arthritis-like pains in the joints of my extremities, as well as stabbing pains and burning. I was very worried. Then on the Saturday night, 30th September, I had terrible insomnia and the next day all hell broke loose with my central nervous system and from then until the following Friday, unfortunately while my husband was away, I was almost entirely unable to eat or sleep and in a state of extreme anxiety, fear and despair such as I have never experienced before and never wish to again. It was like being in hell. I shook uncontrollably, and it became worse when I tried to force a few mouthfuls of food down. Occasionally I was able to break down and cry hysterically, but mostly I was beyond tears. I felt removed from my own reality. I was also unable to leave the house.
I would like awake at night feeling my hands and feet burning and aching. A low point was when I realised that my right knee and elbow were making a terrible crunching noise. There was nothing I could do to distract myself, I had no interest in anything and everything, books, TV etc. just seemed scary and ominous. The world felt hateful.
At this point I luckily found the Quinolone Support group so that was one glimmer of light, being able to get support and very useful information from a group of people going through the same as me. That Friday, 6th of October, my husband came home and I managed to go for a walk with him, eat some fish and get some sleep. The acute crises had passed but I was still at the start of the journey to hopefully get better. The following week I was very fatigued and short of breath. I would feel my heart hammering when I tried to walk up an incline.
It’s now one month and I have been incredibly up and down. I can have a day or a few days of feeling almost normal, then days where I am plagued by awful and ongoing anxiety attacks. My sleep is similar – a few days of okay sleep and then more difficulties. I often now wake up in the middle of the night and can’t get back to sleep. Melatonin is helpful, and cbd oil.
Physically the worst of the burning and the arthritis-type aching has currently subsided. I still have burning in my palms, more so the right-hand side. My right knee and elbow are still making the crunching noise – strangely, it is painless. I have also developed tinnitus. Fortunately, it’s not severe but that and the burning are an unpleasant reminder that I am still damaged and unwell. The fatigue and shortness of breath has passed, which is a relief as I often try and walk the anxiety off during the day. I’m lucky to be walking distance from the beach and the Downs.
So now I feel like I’m playing the waiting game to get better, while being at the mercy of these roller coaster cycles. I am trying to be as proactive as I can with my health – I take the supplements recommended by the Fluoroquinolone Solution*, as well as the cbd oil* as mentioned. I have cut out sugar and gluten and buy only organic animal products. I’ve not touched my diazepam again nor alcohol and obviously not caffeine. I have started meditating and am about to have acupuncture and join a yoga group. I get out of the house for a walk every day and do the gardening – for some reason that relaxes me but house work doesn’t. I continue to appreciate the support and information of the Facebook group. I am still scared that things will worsen, owing to the unpredictability of the effects.
I have made a list of all the symptoms I’ve experienced below:
Unusual perception of temperature and burning on palms.
Sensitivity to light and touch
Anxiety
Panic
Depression
Derealisation
Agitation
Insomnia
Total loss of appetite
Shaking/tremors
Involuntary movements of limbs
Fasciculation (muscle spasms)
Burning and stabbing pains in extremities
Pains in joints of extremities - feels like arthritic pain
Burning/pressure sensation in teeth and tongue
Crunching sound in right knee and right elbow
Clicking joints.
Burning pain in chest
Shortness of breath
Weakness
Fatigue
Tinnitus
Urinary frequency and difficulty voiding completely
Pelvic pain
Electric shock pains in thighs and upper arms
Possible worsening of eyesight??
* More information about these things on the What's Next page.
(32) Was it Quinolones that damaged my health earlier? (ET):
I'm not a huge writer as I find it painful to write long and concentrate as I have ME/CFS & Fibro. I received Levaquin in hospital after my first admission of Diverticulitis. I came out of hospital and couldn't walk properly. It was weeks before the acute pain left me and they diagnosed me with myositis at that time.
As I was suffering with acute leg pain, I paid £50 for all my medical records from birth. When I started reading them I noticed I had been given them (Quinolones) years before and I have been thinking maybe it was the Quin that has damaged my health. I can't be sure though as it was a Consultant that diagnosed me with ME and a Rheumatologist that diagnosed me with Fibro. I'm still left with pain, weakness and muscle atrophy in my body.. just moved to... a bungalow for my legs. Suffered terribly with my legs since being floxed.
ET
(33) 14 months later and still suffering (MH):
I was admitted to St James Hospital in Leeds on the 6th December 2015 and diagnosed with Acute Prostatitis. Whilst in hospital I was administered an IV drug which I assume was Ciprofloxacin. On discharge I was given Ciprofloxacin in tablet form and told to take two 500g tablets a day for 2 weeks. While this treatment was very effective and cleared up theinfection within about a week, it wasn’t until after taking approximately 10 days of tablets that I began to feel very poorly.
The symptoms I suffered were tendon damage to my feet, twitching and spasms in my calves,severe stomach pain, burning sensations all over my body and what I can only describe as a very bad flu symptom and generally feeling very unwell.
It is 14 months since taking the Ciprofloxacin antibiotic and I am still suffering from all of the symptoms above. I have found now that I have severe adverse reactions to pre-packed meats or any foods that are processed.
MH
(34) Perfectly healthy prior to Cipro (IR):
I am reaching out for help, advice and support from the group. 2 months ago I was prescribed Cipro 1000mg per day for 4 weeks. After two weeks I stopped due to the reaction I had/have.
I feel like my life has ended. Burning and pain in arms and legs with very strange sensations like my limbs have disappeared. Tendon pain, all my joints are clicking and popping. Dizziness, vision problems and crazy panic attacks.
I was perfectly heathy prior to this other than suspected prostate problem which is why I was given Cipro. I have been in and out of hospital but had no help other than pain medication.
My world has been turned upside down by Cipro. My neurological symptoms have become severe with neuropathy confirmed. I can hardly stand due to my dizziness (my wife is typing this for me as I just cannot see the screen properly). It is now also really difficult to walk due to very bad Achilles pain.
The consultant who prescribe the Cipro is in denial about this being the cause of my problems. He insists he has never seen this before nor heard of the associated problems with Cipro! I can confirm that I have completed my yellow card report back in December.
The consultant prescribed NSAIDs (diclofenac) at the same time as CIPRO. To make matters worse when I went to A&E when the symptoms first materialised they gave me a high dose steroid injection (I think it was kenalog). I have now been prescribed pregabalin and amitriptyline to manage the pain and help me sleep but I just don’t know if this is the right thing to do.
Later:
I had an appointment with my neurologist this morning who is still suggesting this cannot be down to Cipro. He said he was going to reach out to Bayer and get some advice. I took the list below with me to my appointment so he had a clear view on what’s happening to me. I am feeling really bad at the moment.
IR
(35) Cipro for diverticulitis – a Kalashnikov AB (SL):
Have been feeling isolated for two years since being floxed. I took. Thought pain would not go away without it but since stopping Cipro and getting onto prebiotics and probiotics etc have no problem with diverticular flare up. Pretty miffed at being prescribed for mild infection. Took Cipro four times for a few days over space of 18 months. Then got sore feet, stiffness, went on to black and blue tendon up left leg. New young GP said not to take Cipro too often. Curious - I looked up internet. Realised what was happening. Back to two other GPs who humoured me and said couldn't be AB cos they are safe, don't look at internet etc.
Normal trip to neurologist and podiatrist. Normal bloods for whatever might cause peripheral neuropathy. Normal CT scan apart from diverticulosis. Got all results over phone. Not been back since. Might go to new young GP if necessary. "Ran" to holistic centre. Got acupuncture, magnesium, alpha lipoic acid, circumin, MitoQ. Go to herbalist for nice tonic for support of immune system, detox liver, inflammation, mood etc and counselling from her as well, very supportive. Cried with anguish for months. Feet and ankles got worse with pain and swelling, limping, stiffness. Not able to walk far without pain for a year. Living in Crocs!
Two years on, feet now much better and walking more without limp, just stiffness and weariness after half an hour or so walking. Get general malaise, over heating, sizzling in hands, legs and feet especially at night. Sporadic tightness in head with rippling effect under scalp. Fatigue, lack of concentration, blurry eyesight, need lots of sleep, aching upper back, loss of confidence, really want to avoid stress of any kind, nippy toes, twitching in random places, funny sensation behind eyes, feeling of leg muscles about to cramp.
When I get a cough virus it goes on for 6-8 weeks. Want quiet life with no worries. Occasionally have a few days feeling more rough, with vertigo, tiredness, anxiety, don't want to go out. In between times can feel quite good. Recently been offered deep cleaning of pockets in gums and have been researching this - more stress. Don't want to do it at all but maybe better for all round health?
I belong to Co-Counselling International (CCI) which is a co- listening organisation that trains people to process emotions. So my past experience in this has stood me in good stead to process all the feelings of abandonment, fear, grief, rage, etc over the past two years. With twenty years of co-counselling and other therapy I had managed to more or less cure myself of panic disorder since childhood and then had only a couple of years of freedom, wanting to travel and join groups - before being limited again by Cipro, back into insecurity and chronic ailments. I know that my background of stress, adrenaline, cortisol, immune problems, sensitivity to meds, all leads to this present carry on, but I don't deserve this any more than anybody else does.
I do feel very aggrieved for floxies who are younger and miss out on all sorts of family stuff and hobbies, jobs etc and of course some people are severely afflicted - makes me mad. I'm in late 60s, have a husband who drives me around, live comfortably, travel a bit and try not to get too depressed.
SL
(36) Moxifloxacin has left me in a wheelchair (JR):
I’m 38, I took Moxifloxacin (Avelox) for a UTI in June – that was 5 months ago.
Prior to taking this antibiotic I lived a full life – I’m an Expat and living and working in the Middle east, I was going to HITT (High Intensity Training) classes 6 times a week and had an active social life.
I would consider myself to be quite health literate but must admit I didn’t read the insert with regards to the side effects of Moxifloxacin, however if I did, because of the way it is worded, I may have taken them anyway, having decided I wasn’t at risk i.e. I’m not a male, over 60 and taking steroids etc.
A couple of days after taking the medication I started to have some pains in my knees – however because I exercised frequently I didn’t associate it with the medication. I was supposed to take a 10 day course, however I stopped after 8 days because the knee pain was getting worse. I did some googling and within 30 minutes, I realized that quite simply, life might not ever be the same.
It seems that there are thousands of people with varying degrees of suffering and damage around the world, but worse, it seems that the medical profession are largely clueless about this and quite often unwilling to offer any help.
I started to lose weight very rapidly – I lost 10lbs in around 2 weeks, I couldn’t sleep and the pain in my knees got worse. It has now been 5 months and I now have:
severe insomnia,
anxiety,
neuropathy,
substantial hair loss,
leaky gut (not getting nutrients from food),
chondromalacia patellae (which I am told will likely lead to me needing total knee replacements),
severe Achilles tendinosis which have been diagnosed with micro tears and joint effusion and
tendon tears in both rotator cuffs and bicep tendons.
Unfortunately treatments which may otherwise work well for mechanical or overload injuries may be catastrophic for chemically injured tendons such as these so options are limited.
I am now in a wheelchair, struggling to go to work through pain and severe sleep deprivation and the worst part is that I am utterly terrified for my future – all I can see at the moment is years of surgeries and pain if I am unlucky.
The worst thing for me personally is that I have completely lost my independence – I rely heavily on my boyfriend, who has the patience of a saint I might add. Where I used to enjoy and even crave my own company – I am now utterly terrified when I am left on my own – scared I will injure myself and end up in hospital pumped full of drugs which will damage me further. I don't socialise much any more due to the mobility issues and because of this I have started to feel lonely for the first time in my life. Every day I wish I could turn back the clock, most days I cry for what I have lost and things that I might never have.
I can’t even have a G&T to drown my sorrows as I can no longer tolerate alcohol…..or coffee or many foods now.
I hope and pray for better times ahead and for a few hours of peace where I am not thinking about this ordeal.
JR
(37) Here's what happened - written shortly after my acute reaction (and it was dictated to my computer as I couldn’t type) (JT):
After I started the Ciprofloxacin (Friday), I began to feel achy all over my body. I thought this was just infection at first. By Sunday morning I was so sore that I could hardly lift the duvet off me. That's when we called the out of hours GP, although stupidly I had already taken my morning dose. The backs of my legs, the tops of my thighs, my forearms, arms, my hands, back and neck were all very, very painful. It sort of felt like I done extremely strenuous exercise. When I called 111 the doctor told me to stop taking it, so I only took 5 tablets out of 14.
It turns out that tendinitis is a potential side effect - and it was affecting tendons all over my body. By late afternoon on Sunday, I couldn't unscrew a bottle, close my hand in a fist, pop paracetamol from a packet or even squeeze toothpaste out normally. It took me five or six attempts and two hands to push the button on my electric toothbrush this morning. Even though I have stopped taking the Ciprofloxacin, the tendinitis has continued to progress.
I've seen the doctor again and I'm now on some powerful painkillers. This is giving me a bit more motion but I'm being very careful due to the risk of tendon rupture. We're hopeful that the tendinitis is not going to be permanent, but it is worrying that the risk of rupture can continue for many months (one study cites cases 6-9 months after exposure).
I've been doing some research, and even though they say the side-effects are uncommon, they seem to be very well documented with significant concern over them. It's very frustrating, in the US the FDA has increased warnings on this drug twice, and gave it a heightened warning recently yet nothing has changed here.
This is a commonly prescribed antibiotic, so you need to be aware that it has potential side effects that may be underestimated by the current patient information materials in the UK. And as they are considered to be uncommon, no special warnings are currently being given (which would be helpful, given that the antibiotic is being prescribed for conditions whose symptoms could be confused with the side-effects). Most people associate antibiotic side-effects with an upset tummy or nausea.
After I wrote this, it took me about 2 weeks for the pain to subside in my joints and another few weeks before feeling normal. I am not suffering any obvious chronic symptoms at the moment but it’s hard to tell if things may be related (some joint issues that I might have had anyway). My GP wasn’t that helpful.
JT
(38) I wasn't told of the potential side effects (MS):
I was diagnosed with non-bacterial prostatitis in November last year (2015) by my urologist and was prescribed ciprofloxacin for 1 month between December and January. I took these tablets for 1 month (total 70 tablets) without being told of the potential side effects that these drugs may cause. During this time I spent many hours sleeping and had chronic fatigue. I continued with the cipro after speaking to a close friend who is a leading prostate cancer consultant. I was reassured that I would be OK and was told to make sure I took the full course of tablets, which I did. Even though I felt terrible I continued.
Well, 6 months on the prostatitis has gone but I'm now getting weird sensations in my legs, feet, hips and lower back. The sensations can only be described as tingling and crawling like you've been stung by some nettles. I get these feelings in my lower legs. I've also recently started with aches and pains in my hips and lower back, like a grating feeling, as if I'm inflamed on the inside. I've also noticed in the past few weeks that my feet hurt when walking and my ankles feel sore like shin splints or bruised. In fact, my right ankle felt like I'd badly twisted it the other week. I am also getting upper shin/knee pain which I presume is where the tendon attaches to the bones? All these symptoms have started over the past few weeks without warning. It feels like my skin is crawling and my legs are stiffer than ever. As a keen amateur cyclist I've noticed I'm no longer able to ride at the same level and still have bouts of chronic fatigue which have never gone away. My bones in my neck, ankle and wrist also appear to crack more than ever.
6 months later:
Why would I be prescribed antibiotics for a non-bacterial condition? Well, it's the first line of defence that the majority of urologists prescribe when faced with a patient who reports symptoms of prostatitis - this has got to change. I am now suffering greatly from multiple side effects that lead directly to Ciprofloxacin and fluroquinolone toxicity. Please let me give you an overview of the side effects these drugs are causing me. Firstly, I have been suffering from chronic fatigue since taking these tablets, and I have had enlarged lymph nodes which indicates the body is fighting infection or trauma. Secondly, I have recently been experiencing additional symptoms such as; gritty eyes, eye pain, weeping eyes, muscle pain, multiple tendinopathy, peripheral neuropathy (hands, arms, feet and legs) and tinnitus. The peripheral neuropathy includes burning, tingling and crawling feelings in arms, hands and legs, which is consistent with the FDA announcement (see link below).
http://www.fda.gov/Drugs/DrugSafety/ucm365050.htm
The multiple tendinopathy includes chronic pain in tendons throughout my body, including; my shoulders, elbows, hips, knees, shins, and ankles which are very sore and consistent with the PIL (see link below).
https://www.medicines.org.uk/emcmobile/PIL.25721.latest.pdf
I have now raised a 'Yellow Card' regarding this drug as I believe that I am now suffering serious adverse side affects from taking Ciprofloxacin. I have contacted my pharmacist and the GP Practice Manager to raise awareness of these drugs with the practice doctors. It is worth noting that there was no GP intervention when these drugs were administered - the drugs were prescribed by a private urologist, with the prescription being sent directly to the pharmacy. If I had been warned of the potential side effects I would not have taken these drugs.
MS
(39) Cipro taken unlikely to have lasting effects? (MKe):
I'm 47, reasonably fit, and absolutely scared to death. I've been given a course of Cipro 500mg and took three tablets. They made me feel a bit spaced out, so I stopped taking the course two days ago, but still feel a bit foggy. Is it possible that these were just side effects, or am I now damned to have further reactions, life changing issues? I've never seen any posts from anyone just having mild issues.
I'm struggling with a bad headache at the moment and didn't sleep last night. Going to see a primary care doctor this morning, as I told them I suspect I'm having a toxic reaction to Cipro.
Got worried again as every time I started drifting off to sleep it felt like my heart was jolting me awake. Never really had palpatations before but I know I have an irregularity from past tests. Heart specialist told me it was nothing to worry about at the time - I guess it could be now.
I was at an NHS 'Go to Doc' this afternoon as I was really concerned about headaches, etc. He was really sympathetic and has recommended that my GP does a full blood work up. He too said that the amount of Cipro taken was unlikely to have lasting effects, but seemed very open to the fact that there could be something going on. A step in the right direction I hope.
Managed to sleep a bit this afternoon, which was a relief. My eyes are a bit sore and I ache a bit, but hopefully that's nothing sinister. I'm planning on keeping as much on my GP's radar as I can, so that anything that happens doesn't just become 'one of those things'. It might help to get them to
rethink giving this thing out in future - you never know. I don't routinely take any other medicines apart from painkillers and an own-brand antihistamine (cetrizidine). I'll be avoiding NSAIDs like the plague from now on. Managed to sleep a bit last night, which has definitely helped.
MKe
(40) Horrendous evil side effects that I experienced (LF):
I'm a 38 year old male that has had ciprofloxacin prescribed 5 times over the last 10-15 years, they were prescribed for a uti as I'm disabled and suffer regularly from these although nothing ever grew when my urine was sent off to a lab. My GP has also prescribed them for suspected prostatitis but again nothing was ever diagnosed. I've also been offered Cipro on numerous occasions recently to try and get rid of uti symptoms despite nothing being grown at the lab but I refused due to the horrendous evil side effects that I experienced from the last lot, they included:
muscle pain, nerve pain, headaches, bad anxiety(being the worst symptom), depression, tiredness, fatigue.
My GP and Doctors ruled out the medication being the culprit but I strongly disagree, I would never take this poison ever again and it should be banned as it destroys lives.
LF
(41) Operation to reconnect snapped tendon( DP):
In 2013 I was prescribed Ciproflxacin for suspected prostatitis. I took about 12 tablets before my Achilles' tendon of my left ankle snapped completely whilst dancing (nothing wild!) on holiday. I was 50. I had to have an operation to reconnect it and the recovery took months.
My wife had to inject me everyday for a month with a very expensive blood thinning agent as I had taken a flight home pre-op.
Since 2014 I have experienced really bad night sweating, dark moods, severe body wide nerve damage, including occipital nerve pain, head and neck spasms, numbness and tingling in hands and feet. Other symptoms: loose teeth (spent 4K on treatment), fatigue, lack of concentration, dark thoughts, hip, ankle and shoulder pain. I was horrified to read about the connection with fluoroquinolones and welcome the opportunity to be part of a UK self help group. I resigned from my job as headteacher in 2015 aged just 52. I am engaged in looking after myself, taking magnesium supplements and vitamin D. I have also started a blood sugar reduction diet. I am receiving hospital treated for shoulder and occipital nerve pain.
DP
(42) My body is so fragile after Cipro (EC):
I am 48 years old and was in excellent general health before I was prescribed Ciprofloxacin in March this year (2016) by a GP in my group practice here in Belgium. I was about to go on a once-in-a-lifetime 3 week holiday to the Caribbean and Central America and asked for my usual medication (not Cipro...) in case I got cystitis while I was away. The doctor said he preferred to prescribe me an antibiotic that would cover potential UTIs and traveller's diarrhoea. I was not warned of the potency of the medication prescribed or of the potential side effects. Ciprofloxacin was completely new to me.
I only took four pills because I felt so sick (more on that issue at another juncture) and now here I am more than 3 months down the line with severe joint/tendon/cartilage pain in my thumbs, two of my fingers, both wrists, both knees, right hip, both Achilles, both ankles and both shoulders. The debilitating symptoms didn't hit all at once but have evolved progressively starting with my thumbs and wrists (which are clicking constantly) and gradually spreading to other parts of my body. The shoulder pain started only a few days ago. I also have pins and needles in my hands and feet. I wake up in the middle of the night - every night - either because of the pain or because both my hands have become partially or completely numb. I also have dizziness, light sensitivity and floaters in both eyes.
My blood work came back normal as did an EMG nerve conduction test. My GP refuses to acknowledge that the Cipro caused these problems. I have also seen a rheumatologist, an orthopaedic consultant and a neurologist and none of them are able to help. They say that they have never seen a case like mine before and that they don't understand what is going on. I know you've probably heard it all before but the rheumatologist said "if it was the antibiotic that caused the problems, you would have been better in two weeks." She went on to say, "Are you sure you're drinking enough water?" If you drink lots of water and take vitamin B you'll feel much better in a couple of weeks. I told her it's been four months now and I drink 2 litres of water a day (always have) and am now taking every vitamin imaginable.
I have been off work for almost two months now but need to return next Monday or I risk losing my job. I am panicking about the return to work because I am in a worse state now than when I was first signed off. I am a translator (written documents) and I honestly don't know how I will manage to type for eight hours a day. This has turned my world upside down. In March/April I was at the gym every day on my holiday and now I can't even climb the stairs in my house without wincing let alone go to a gym.
I have found a wonderful physiotherapist (who actually takes me seriously!) but after four sessions (last week and the week before) I have decided to take a break as I think the physiotherapy has perhaps made things worse. My body is so fragile. My legs have been tingling and twitching ever since. I'm terrified that it's here to stay. It's like an army of ants at times.
I feel like I'm hitting my head against a brick wall with the medical establishment. Since the medical community has been unable to help me, I have been doing a lot of Internet research myself and have been taking vitamin and mineral supplements for the last few weeks and taking baths in magnesium flakes but, as I say, my condition is still deteriorating rather than improving.
I'm scheduled to have a bone scintography next Monday (which involves the injection of an iodine contrast medium and radiation exposure). I'm really worried about it because any time anyone touches my body now, things get worse. The 4 sessions of physio I've had, for example, have made things worse rather than better. On the other hand, if the bone scintography is useful as a diagnostic tool and doesn't cause us floxies additional harm, I'll go through with it.
I am absolutely convinced that there are large numbers of fluoroquinolone victims out there that think their problems are due to age, etc., and simply haven't joined the dots and made the connection to the drug they took. The fact that the medical community seems to be largely in denial certainly doesn't help. It's so important to listen to one's own body and develop a thicker skin in order to say no to the 'professionals'. A case in point being anti-inflammatories.... which have been proposed to me by numerous doctors... and caused numerous raised eyebrows when I declined.
I will have to sign off here for now as my right wrist is in a lot of pain.
EC
(43) Ofloxacin for pelvic infection – side effects dismissed by GP (LG):
I live in London and am 36. I took Ofloxacin for 14 days in early February this year (2016). This was prescribed for a pelvic infection caused by a colposcopy and biopsy (thankfully which had a clear result). I suffered a range of side effects whilst I was taking the drugs - vertigo, joint pain, tendon pain, feeling faint, insomnia and shivering. At the time, this was dismissed by my GP and another doctor (a Gynocologist) as the pelvic infection, rather than an adverse reaction - despite feeling progressively worse rather than better. It was towards the end of the two week period when I started researching online and found the Floxie Hope website and other online information about the side effects. I realised immediately that this was what the problem was. I was, of course, horrified.
Although I stopped taking the antibiotics the symptoms continued - further severe joint pain; skin rashes (PLE - sensitivity to light and other 'flush' rashes); 'weak' elbows, wrists, knees, ankles; joint popping; aching limbs, the toxic/chemical feeling; fatigue. The next range of symptoms included 'electric shock' feelings in legs and feet; extreme menstrual pain; a floater in my eye; muscle weakness; and continued skin problems including facial dehydration/blotchy/early rosacea.
Having had a few months of feeling like I was improving, I'm currently suffering with lower back pain which is very challenging. I take a range of supplements including magnesium, Vit D3, Vit C, a multivitamin and CQ10 etc. Other things that have helped me throughout this ordeal include acupuncture (which has totally saved me), floatation tanks and a gentle yoga class.
Whilst my GP is broadly supportive, I've also recently had some difficult experiences with a few medical professionals, including a rheumatologist. I read about a secondary flare up...perhaps it's what this is, also about avoiding Ibruprofen - though I did take it, along with co-codamol at the time of taking the antibiotics which I'm sure did nothing to help. I now try to avoid all painkillers altogether - and just using paracetamol if I really really have to.
I'm more than happy to talk about the benefits of acupuncture. I've been going for about 15 years on and off for various things and have always found it remarkably effective - for example I had repeated and severe cystitis/kidney infections in my early 20s which was 'cured' by acupuncture, to - on the other side of the scale - helping to recover from a nasty bout of sinusitis that I couldn't shift. I've been seeing my acupuncturist since the early days of being floxed and she has been tackling the various symptoms as they roll in and out - she managed to control the vertigo, has somehow managed to stop the 'electric shock' pains that were happening in my legs, and she is currently helping to reduce my back pain. I also feel that having someone look at the body in a holistic way - and who has a belief system that connects seemingly unrelated issues - is helpful to people who are floxed as it addresses the heart of the issue. Plus of course it's not invasive and doesn't involve taking any further medication which I find very appealing. It's been a source of considerable support for me.
LG
(44) Ofloxacin – I'm in a bad way (GM):
I'm in a pretty bad place. I was prescribed 6 weeks of Ofloxacin (400mg a day) for epididymitis. While taking them I experienced severe muscle twitching all throughout my body. I have been getting suicidal thoughts and anxiety which I've never suffered from in my life. My bloods were checked and it was reported I had high blood sugar. I've never had this in my life either and a follow up fasting test showed my bloods to be fine. It's been a little over 2 weeks since I've finished them and now I have randomly lost around 6kgs. I also suffered from slight insomnia while taking them and night sweats for the first 3 days on them. I've been back to the doctors about the weight loss and they've said everything blood/health wise is normal. My hands and feet have also suffered and I am now unable to feel pain/temperature changes in both. Have I been floxed? Please help I'm in a bad way.
GM.
(45) I've ended up with peripheral neuropathy (JS):
In September 2002 I became very ill with pneumonia and was hospitalised for a while and on a drip. I was off work for a number of weeks afterwards and on medication for a year. Early on I was given Ciprofloxacin and became very ill when I took it. At the time I was given the Cipro, I kept a note about the other medications I was prescribed and I've kept this laminated note in my wallet all these years and made sure the docs have put this on my notes. It says "Co-Amoxiclav Tablets made me ill, Ciprofloxacin made me ill, Clarithromycin made me sick, Codeine made me ill". I don't know if there's a relationship between any of these medicines. I also had asthma as a result of the pneumonia and was told I’d have it for life, but actually that cleared up within a year or two. In December 2002 I remember struggling to breathe and at one point I collapsed but I don't know what meds I was on at that time, it could have been the Cipro, but it was certainly after I’d been taking it.
In August 2008 I became ill again. Over the course of 48 hours I lost my hearing completely followed by a pain in my hands which felt as though they had been beaten by a hammer. The pain then spread through my legs and into my feet. It was so intense that I could only wear shorts and at night had to sleep with my legs hanging over the edge of the bed as I couldn’t even put a bedsheet on them as it was absolute agony. The doctor at the local practice delayed sending me to hospital and told me that there was no link between the hearing loss and the pain in my hands, legs and feet, even though it had all started at the same time. He even told me that I was deaf in only one ear when it was clear that I had no hearing at all. He made a complete hash of seeing me and I eventually put in a complaint about him, but the practice manager very obviously did not want to follow it up and did her best to stop me taking it further, something I regret.
I went back after 5 days and saw another doctor, and I was sent immediately to hospital. They ran tests on my hearing by which time some damage had been done and I was told I should have been referred after the initial appointment, and it was now too late to treat it. My hearing eventually came back to a degree after some months, but accompanied by constant tinnitus which I still have. At one point I was put on 4 different tablets, taking up to 24 tablets a day over the course of 3 weeks. I went to see a neurologist specialist at the RBH who straight away told me that the link between my hearing loss and the pain in my hands, legs and feet was down to nerve damage. So much for the GP telling me there was no link. Not only did I have the pain, but it felt as if I had sand in my shoes and as if I was wearing socks all the time, when I wasn’t. I had extensive tests for several months on the pain. I was tested for MS, a brain tumour, cancer, and various other possible illnesses. I had a lumbar puncture, but eventually the specialist gave up. All he could say was that it was nerve damage, but as for what caused it was anyone’s guess. I've ended up with peripheral neuropathy and I'm on Gabapentin to try and keep it under control. The initial medication they gave me just knocked me out all the time. The Gabapentin doesn't take away the pain, it just fools the brain into thinking it isn't there. I can't take the full recommended dose because it sends me to sleep during the day, but if I take less than the recommended dose it leaves me in constant discomfort, but at least not in unbearable pain.
JS
(46) Cipro problems - what to do next? (PK):
I came across cipro side effects when researching 'chronic fatigue after kidney infection'.
I'd been in hospital for a week and was given cipro (they in all fairness did try another antibiotic beforehand but it didn't work). That was in August 2016. Ever since then I have been recovering, very slowly and always just assuming it was still from the infection. I am 24 and used to be incredibly fit and healthy, and now I'm exhausted after a fifteen minute jog. My knees make the most horrendous noise going up and down stairs, my body still aches and I feel dizzy and spaced out at times.
My work have been fantastic, I've been gradually building it up as it's physically and mentally demanding. However working is using every ounce of energy and progress in recovery has reached a plateau. Currently I am debating taking time off work for a couple of months to rest properly. Since discovering that it may have been the cipro causing my problems I feel very confused as to what to do next!
PK
(47) I was in constant agony (RC):
The last 12 months of my life have been hell. There is no way I can possibly fully describe it in words, but I will just give you a very brief story. Starting in March 2016 I was given 2 weeks of Ofloxacin and 8 weeks of Ciprofloxacin for suspected epididymitis/prostatitis. Even though no evidence of infection was ever found and I'm pretty sure I never actually had an infection. I was also told I could take Ibuprofen at the same time, which I now know is not a good idea. Up until March 2016 I was a fit and active firefighter. I regularly played football, squash, cricket and golf. I also enjoyed running and going skiing. Since taking these drugs I have been unable to do any of these activities and unable to do my job as a firefighter. When I was at my worst I could barely walk, I was in constant agony and couldn't sleep at all.
Here is a list of just some of the symptoms I experienced:
Extreme pain in my joints and tendons, particularly in the following parts of my body - Hips, Knees, Achilles' tendon, Groin, Back, Wrists, Toes and Fingers
•Burning skin sensation
•Electric shock sensations
•Stinging pain in hands and feet
•Numbness in hands feet and groin
•Severe Insomnia
•Severe Anxiety
•Hallucinations visual and audible
•Vivid dreams
•Tinnitus
•Blurred vision
•Going extremely hot and cold for no apparent reason
•Pins and needles
•Fatigue
•Muscle twitches
•Heart palpitations
And to top if off, the pain in my epididymis and prostate only got worse after taking the drugs. Most of these symptoms have gradually improved or disappeared but many still persist to this day. Most doctors I have seen are completely unaware of the side effects of these drugs. I was told to carry on taking them, even though I was displaying side effects. I have seen various doctors in the last 12 months. The majority are unaware that fluoroquinolones can cause problems long after you have finished taking them. Only recently did I see a rheumatologist who diagnosed me with "fluoroquinolone syndrome ". Lately I have started to think about some of my symptoms; I was sure that I had experienced some of these strange symptoms years ago. Although they were no way near as severe as this time around. I worked out that I had experienced a lot of the same symptoms in 2011. I then requested a copy of my medical records and there it was, in April 2011 I was given 4 weeks of Ciprofloxacin for prostatitis. Looking through my records I went to see various different doctors and surgeons in 2011 about various unexplained pains. They never did come up with an explanation, but everything just seemed to resolve itself over the next year or so. This whole situation could have been avoided if doctors were aware of the side effects of fluoroquinolones: they would have recognised I was displaying side effects and discontinued the medication. Also if I was warned that these drugs could cause long lasting or permanent damage, then I very much doubt I would have ever taken them as I was 99% sure I didn't have an infection. But I put my faith in the doctors and thought I had better take what they prescribe. I had no idea an antibiotic would be capable of damaging me like this. I still have the patient information leaflet I got with my prescription. Nowhere does it say side effects can be permanent!
RC
(48) After Cipro I'm virtually housebound (SJ):
Basically pre 1990 fit as a fiddle though did have jaw problems tmj (Temporomandibular disorders) - had op for such in 1990. I was left with MRSA, which took 6 months to get rid of with different antibiotics, the last of which was Ciproxin. That did rid me of the MRSA in my sinus but my health has been downhill ever since and now I'm virtually housebound. I was diagnosed in 2010 with CFS & Fibromyalgia but haven't been tested for anything at all to rule out other things.
I have hoards of symptoms - recurring sinus infections / fatigue / muscle pain and weakness / joint pain / numbness / tingling / cramps / tinnitus / dizziness / sickness / IBS / headaches and probably many other symptoms I have forgotten! I've doubled my weight as had to give up gym etc., which in turn has caused diabetes and sleep apnea. I also have a huge amount of burning, like internal sunburn. Yikes I sound a mess!!
SJ