Fluoroquinolone Toxicity Syndrome
Posted , 53 users are following.
This is a discussion for users who wish to specifically discuss Fluoroquinolone Toxicity Syndrome. You can add your history here and there are some resources listed below that may be useful.
https://www.nature.com/articles/d41586-018-03267-5
Article published in Nature magazine about Fluoroquinolones and the reasons why they can have such devastating side effects.
http://www.emedexpert.com/lists/antibiotics.shtml#5
For a list of Fluoroquinolone antibiotics
http://www.quintoxsupport.co.uk/
Quinolone Toxicity Support UK
A site for those who are suffering from Fluoroquinolone Toxicity Syndrome as a result of being adversely affected by fluoroquinolone antibiotics – Cipro, Levaquin, Avelox, Floxin, etc.
Quinolone Vigilance Foundation
https://www.facebook.com/groups/quinolonetoxicitysupportuk
Closed Facebook group for UK users.
https://yellowcard.mhra.gov.uk/
If you think you have had a side-effect to one of your medicines you can report this on the Yellow Card Scheme.
http://www.adrreports.eu/en/index.html
European database of suspected adverse drug reaction reports
http://www.fda.gov/Safety/MedWatch/default.htm
FDA MedWatch: FDA Safety Information and Adverse Event Reporting Program
http://www.fda.gov/Drugs/DrugSafety/ucm500143.htm
FDA Drug Safety Communication
12 likes, 271 replies
richard38423 Emis_Moderator
Posted
I was trapped in a 'should i' or 'shouldn't i' way of life taking Cipro. It amounted to 10,000. 750 mg. meds I've consumed over a 25 to 30 year period.
miriam65408 richard38423
Posted
Hi Richard,
I'm not totally surprised to read this as someone posted on a different thread that they must have taken hundreds of courses over the years. This person said she realises now that she probably has some side effects which she thought was 'age' catching up with her.
Can I ask if you have ever felt you have had any side effects? I'm aware that, just as some people have an instant reaction, some people never seem to have a problem with Cipro (and the other Quinolones). I'd be interested to know as I'm trying to raise awareness about just how damaging these drugs can be. They were originally 'designed' to tackle the most severe infections such as anthrax but became increasingly popular when it was realised that they can kill just about any bacteria. Unfortunately this includes mammalian mitochondria ("the powerhouses of all our cells" so their effects can be devastating - to animals as well as humans.
I'm beginning to understand why some people are affected more badly than others but find it hard to grasp how some - like you - are able to tolerate so many doses. I'm also intrigued by the way you say you were 'trapped' into taking it. Would you be able to say a little more? You can personal-message me if you prefer (click on the envelope symbol by my name). I'm so serious about this I'm in touch with the MHRA, so please don't think I'm some kind of crazy!
richard38423 miriam65408
Posted
I will start by saying that people may have existing issues or traits that may make for a very unique result when affected or not by fluoroquinolones. I am sort of super human now, I feel. I'm better at almost everything. My nervous system is just that..nervous.. and I'm aware of a lot that takes up all my days to be fascinated with.
kenneth123 richard38423
Posted
I got a similar feeling after drastically changing my diet 16 months ago. After three months of no sugar, tea, coffee, processed foods, alcohol etc and eating loads more greens including juicing greens, carrots and apples, lots of fish. Bits of chicken. Must be the mitochondria thing in our cells suddenly feeling good and being allowed to generate more energy. Your tablets seem to have done a similar thing. Could it be that you too are on a healthy food regime or are you on the SBD standard British diet. Just made that up. Haha.
richard38423 kenneth123
Posted
Hi Kenneth
Yes, I have gone the logical way of finding out answers by doing the diet and destressing changes. Since I have done these damages and diets in numerous phases; I feel the result is quite incredible as a feeling of finding out more answers than you would have found without being such a messed up and tortured sack of cells. So, how can I feel bad at people's stories of doom and gloom when I know the upside, if they get there, will be intense. I must add that I was radiated at three weeks in my mother's womb and if I had mitochondria damage even before birth, and possibly through sensitivity, through family genes; then I believe my altered state is not too far from super human powers and floxing in stages has made for a perfect storm of nerves and defiance and positivity. It's quite a cocktail that leaves me never needing to embibe for a high. The abilities I have are delightfully tragic born. It seems mitochondria damage results in a wave of steady and compiling problems. The problems of many parts being physically damaged may never go away, but the process to find a rebirth of sorts, within a lifetime, is quite the fun unnatural (or still yet natural) experience when you've made the journey.
kenneth123 richard38423
Posted
Wow. That's a lot to digest.
richard38423 miriam65408
Posted
Hello Miriam
If it only takes a pill sometimes to severely hurt or kill a person, then what might the ramifications be if cipro is in the ground or waterways? Yes, the animals and birds, insects, etc. How many people flushed their unused cipro in the ground near their own home? I gave my unused pills to a hospital to dispose of, but where is it safe to go?
I've had too many symptoms to think of. I think my personality made for me to offset the terrible side effects with strange stress relieving methods. So, I'm more interested to say think of all the odd behaviors that can be from cipro. Who knows if reproductive this game are being severely hurt or killed by this drug. I am surprised I've never become a daddy. I'm 48 and should have gotten a woman pregnant at some point, but still I feel like it's near impossible. Now, after I've stopped taking the cipro, I feel to make and eat as much probiotic as possible and eat many more vegetables. I think yogurt eating must have helped me during my worst cI pro
d79454 Emis_Moderator
Posted
I'm still trying to figure out if I got a side effect from Cipro or not or I'm just sitting too much. I took one pill of cipro for a possible UTI and after about an hour or 2 felt some tingling in my leg down to my feet. I stopped after that one pill and tingling dimished in my leg. Just feel it on bottoms of my feet if i'm sitting. If I stand up..I feel almost nothing at all. If I sit, it slowly starts to come back. If it's a side effect is the tingling always supposed to be there no matter sitting or standing? Today is first full day of not taking Cipro. How long does this tingling side effect usually last? If it is a side effect for me..or I just need to get up off my bum and not sit much lol
kenneth123 d79454
Posted
Hi d79454.
unfortunately I thnk you must keep researching Ciprofloxcine on the internet. There are special medical papers on the side effects. Some say the chemical can stay stored in your body for a year. Other people seem to have no problem. The warning from Bayer last year actually states what conditions people might have that possibly causes serious side effects. I was prescribed them about three weeks ago. I did some research and haven't taken them. She me of the side effects are irreversible. Not nice if you are playing Russian Roulette.
thats the best I can say for now.
keep researching. Go on medical sites.
d79454 kenneth123
Posted
I've read quite a bit already but it's mixed of side effects wearing off and some permanent. It's just confusing. And everything I seem to read is from worse side effects and not much on the tingling sensation.
miriam65408 d79454
Posted
Hi d7,
Have I got this right - you've only taken one tablet of Cipro so far? There's no reason why the tingling won't be from the tablet - it has to start somewhere, sometime but I expect most people don't notice it at the beginning. It won't make any difference whether you're standing or sitting - only your perception of the tingling will probably be different depending on how your weight is distributed.
Some people can take many many tablets before they notice any problems while with others it can kick off straight away. Opinions vary as to why this is but it seems to be based on your genetic make-up and/or whether you have got any previous toxic overload from fluorine-containing medicines/water or from teflon products (PFOA or PTFE intoxication).
Also, you say you're confused about side effects being permanent or just wearing off. This is how it is - some people get an odd ache or pain somewhere that may just come and then go - or it may stay with them for years. No wonder the side effects and adverse reactions (permanent or delayed reactions) are not very well documented!
Everything you read is about the worst, full blown life changing symptoms because most people are told to continue with the tablets by their doctor - despite the fact the leaflet says to stop if you get strange pains etc. Most people put their faith in the fact that their doctor knows best - and end up damaged, maybe for years. Very few people stop after just one pill so well done you. All you need do now is make sure you never take another quinolone - ever. The fact you were given it for a 'possible' UTI is shocking - these drugs were only ever intended for the most serious infections.
Keep finding out about it - there are many other discussions here on this site under the fluoroquinolone heading. Many have good and helpful advice. You sound like you've found some sites already so please just remember that 'official' sites will preach the mantra that these drugs are good and the side effects are very rare (this is what most doctors believe). The 'alternative' sites (such as the addresses given at the top of this thread) give the true story - and these are the places that doctors aren't supposed to visit.
Who do you trust?
d79454 miriam65408
Posted
miriam thank you for your lenghty reply. I did call my doctor after this feeling and was told to stop taking them. As of now the tingling has been getting less and less as the days pass. It's been 3 days so far. Started below knee first day then has been moving lower and lower and it's just bottoms of my feet i feel just a little bit. Nothing compared to 1st day. I hope it eventually just stops completly. I'm on my feet all day and busy so I pretty much forget I have it till I finally sit down and think,"hey i have the tingling still a bit." Fortunate for me this is not something that will hinder my life like I read on most of the worst storied. I'm suprised this medication is still on the market as I'm sure there's other antibiotics that are safer and produce same result to cure infection. My doctor decided to wait on what the urine cultures return to treat the infection if any. And made a note on my record that I'm allergic to anything in Cipro class meds. Hopefully nothing else will creep up when and if this tingling ever passes. I'm reading this stuff takes a long time to clear your body.
gillian37107 miriam65408
Posted
My husband had a tingling tongue from day 1 . We have since found out that he was given cipro back in the 1980's and again in the 90's so his 3rd prescription was the one that put him in overload . Maybe D7 had been given it prior and not paid attention to what antibiotic he was given just like my husband . It was only checking back that we found out .
d79454 gillian37107
Posted
This is a horendous medication. My tingling is pretty much gone completly from my feet. I just hope it doesn't return again now that this crap is in me. I'm thinking of getting a medical bracelet that says not to be given any antibiotics from that class. My heart goes out to the people that have been severly affected by this medication.
miriam65408 d79454
Posted
You were very lucky that your doctor told you to stop taking them. Most say to carry on with the course and that the pain or whatever will stop when you stop taking the tablets. This is not so - and yet when people go back with their lives ruined these same doctors say it can't have been the Cipro! It actually says on the packet leaflet to discontinue if you get pains but the doctors just have to know best!
I think you're also lucky that the doc has made a note on your record and that it applies to all the drugs in the fluoroquinolone class as any one of them could affect you very badly. A bracelet isn't a bad idea as you may be hauled into A&E unconscious one day and they might start to pump IV Cipro into you - it has happened!
Take care.
john64259 d79454
Posted
I pretty much have the same reaction as you. You can read my symptoms a few pages back. My symptoms were just a little worst than yours.
If I remember right, I took 1 pill 500mg and a few hours later I felt tingling in my hands and feet. The tingling travel to my elbow after a few more hours. It also had some physcological effect on me -- I was having nightmares/vivid/weird dreams and my mind seems to be a little hazy. My temperature senses also seem to be affected (I was sweating even though it was cold, some parts of my body will feel cold and hot though they're physically normal temperature). The tingling become non-continuous after a day, and it comes back intermittently. It finally stopped after a few days. Though there was tingling in other parts of my body randomly appearing for a few hours at a time after that. All the tingling stopped after a month or so.
miriam65408 john64259
Posted
Hi John, and D7, and Gillian, and anyone else affected by Cipro or another fluoroquinolone!
If you are in the UK, please PLEASE go to the Yellow Card link found in the moderators post at the top of this page, and click to report side effects. Just follow the prompts that they give you - it doesn't take too long but if you can complete it with details of what you took and when plus how it affected you, it all helps MHRA to build up a more realistic picture of what these drugs are doing. If you can get your doctor to complete one as well, even better (MHRA will sort out that it's two reports for the same incident).
The big problem we have is that very few people report their side effects, especially if their doctors don't believe them, and so the national picture looks like the side effects are very rare - and thus doctors won't believe it's happening to you! It's a visious circle that will only be broken by increased reporting and awareness. Please do it today, don't put it off til you feel more like it as it won't get done!
It's no good just saying these are horrendous drugs - the bigger picture is that more and more people will be damaged by them unless those who are presently damaged can make their voices heard. Click on the Yeloow Card link at the top of this thread - please!
sandra40102 miriam65408
Posted
derek76 sandra40102
Posted
d79454 sandra40102
Posted
Same here I'm in US. would like a site to report these issues.
d79454 john64259
Posted
john, i messaged you up above and was asking just that..how long did your tingling last. I get it off and on a little but as more time passes seems to be going away little at a time. Guess it's going to take few weeks to finally get rid of all this side effect. I didn't get any other side effects as you did though.
miriam65408 d79454
Posted
In the US I think you have Medwatch linked to the FDA? The address is in the pinned post at the top of this thread - just scroll up! The FDA made an announcement about the side effects July 26th last year, you can find it if you type in the key words and the date. I can't give links here. The addresses at the top include 2 US suport groups which can give you advice and information - I recommend floxie Hope.
sandra40102 miriam65408
Posted
I have been reading the stories of people's recovery onFloxie Hope which has been veru encouraging. Thank you for sharing it with me.
sandra40102
Posted
derek76 sandra40102
Posted
harriet67221 d79454
Posted
d79454 harriet67221
Posted
Sorry for the late reply. harriet67221. My tingling took about a month to fully go away. About a week in it was just bottoms of my feet that tingled. By two weeks it was off and on. During the day can't really feel it but it was at night when you're laying in bed you just feel that constant tingling in bottom of your feet. By 3 weeks it was pretty much all gone. After all this and being misdiagnosed as having a UTI turned out I had kidney stones but without any pain associated with passing them. I was put on doxycycline for inflamed prostate also a week before I passed the first stone. Who knows if they 2 were related. The nurses before being admitted to see Urologist asked if I was allergic to anything. It was a big YES!!!! Even my urologist said why they gave me such a strong antibiotic for a UTI.