Fluoroquinolone Toxicity Syndrome

Hi everyone,

I just want to share my story of an encounter with Cipro last week.  My post is detailed, but the last paragraph is what I'm trying to get at if you want to read ahead.

I'm male, 35 and in the USA.  I had a UTI 3 weeks ago, and the doctor prescribed me Bactrim (sufameth/trim) for 10 days.  A lot of the symptoms went away, but I didn't recover 100%.

When I gone to see the doctor again, he prescribed Cipro 500mg.  I had different types of antibiotics before, and I had no side effects of any kind with any them, so I don't expect this one to be too different.  I took 1 tablet at 8PM, and it seems to have eased my symptoms a few hours later, and I gone to sleep.  I woke up at 1AM with tingling in my hands and have this weird temperature feeling -- I feel cold, but I was sweating.  My fingers were very cold, but my hand (palm) was warm. I didn't sleep well.  I got up at 7AM and my left arm started to tingle along with my hands and feet.  My armpit was also sweating a lot (wet shirt), but the room was cool (72F), and I never sweat that much in the armpits even when it's very hot.

I was supposed to take another dose at 8AM.  I called the doctor's office since this is one of the side effects listed as to check with the doctor, and the receptionist said they would get back to me.  I decided to pack the med with me to work and consider taking another one since the instructions said to continue as the default.  At the end of the day, the doctor's office didn't call me back, so I stopped by the pharmacy and asked the pharmacist if I should continue.  He said don't continue until I talk to the doctor.  A few hours later I got a call from the doctor, and he said to stop and pick up Keflex instead.

The tingling in my hands and feet continued for about 48 hours and then it subsided after a few days, but comes back randomly for a couple hours.  In the last couple days it seems to have stopped completely.  I hope I don't have peripheral neuropathy as some said that symptoms can appear months later.

I did quite a bit of research on this since my side effect with Cipro.  From what I can gather, the drug completely leaves the body in 24 hours, https://en.wikipedia.org/wiki/Ciprofloxacin#Pharmacokinetics and damage done is in the cell's mitochondria (bacteria like organelle).  These appears to be oxidative damage effect of fluoroquinolone antibiotics on cells http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3249743 .  There are suggestions of taking large doses of antioxidants with these antibiotics (or other bactericidal antibiotics) as a preventative measure http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3760005/ .  Just a few months ago, FDA has approved even stronger warnings on these antibiotics http://www.medscape.com/viewarticle/854067 .

I'm lucky in the sense that both the doctor and the pharmacist told me to stop unlike some of the stories I read on here and the Internet.  I'm thankful to those that have suffered from the toxic effects of fluoroquinolones in making others aware of the issues as much as possible -- I might not be so lucky if there aren't much publicity and FDA didn't just upgraded their warnings recently.  I hope everyone continues to recover and get better and better with time.

Hi John, and thank you very much for sharing your experience here - I certainly do hope you got away with it.  Just make sure you never take another FQ antibiotic again - some people wear a dogtag or something to alert the medics if they're in a coma or something!  I don't agree that the drug completely leaves the body in 24 hours, but I'll check the link you posted when I get a minute, and thanks for the other links. 

I think there is a lot more awareness now in the US, and you have several websites and forums there to help you.  I'm UK ambassador for QVF, and a few UK people have found our UK group here via Floxie Hope  - that's a great source of info if you haven't come across it yet.

Thanks again, and keep spreading the word - the more people who are floxie-aware, the fewer people that will be harmed by these powerful drugs.

All the Best,

Miriam

Hi Miriam, a couple of days after my post here, I did start to have additional symptoms of numbness/tingling/crawling on the skins of my flank area; I never had that kind of sensation there so it was a strange feeling.  I google what can cause it and generally it's symptom of nerve damage, so I was worry, but that subsided as well after a couple of days -- it returned intermittently, but so far it has stopped completely.

And for the drug complete leaving the body in 24 hours, I wasn't reading it carefully -- it's "virtually" gone from the body.  There is still some left though it's 10 times less than at its peak.  It probably needs another 24 hours or more http://www.ncbi.nlm.nih.gov/pmc/articles/PMC174819/?page=3 (graph on lower right).

After reading about the side effects and stories on here, I have send out information and warnings to my relatives and tell them to be careful and not take it unless there is no choice.

Best wishes,

John

Some bad news for me ... I started to develop these lumps on my muscle/ligament/tendon.  The doctor don't know what it is or what caused it, so he's sending me to a orthopedist ...  Not sure if it's related to Cirpo, but it's a musculoskeletal issue it seems.  (I have another reply under moderation because of a link in the post so when that gets approved, hopefully it's not confusing).

Hi John, sorry things aren't going so well as you first thought.  Tingling and crawling skin sensations seem to be quite a common symptom, and muscle/ligament/tendon problems are very common although I'm not sure if I've come across lumps in these areas before. Cipro can cause lots of musculoskeletal damage, and you must be careful not to be referred to anyone who might suggest you start normal physiotherapy exercises as these can make the damage worse. If you search for fluoroquinolones and tendonopathy you should find some articles (if I give the link I'll be moderated!).  The FloxieHope site will have information on this - have you looked at it yet?  There's loads of information and Lisa is very helpful, she started the site after she was floxed herself.  Good luck, and be careful not to exercise too much!

Thanks for the information!  I will search floxiehope for exercise information.  I'm not suppose to exercise?  I used to exercise in the gym twice a week, though I only restarted this week since I stopped a few weeks ago ... I will google about it as you suggests, but does anyone know when I can safely exercise again?  I was going to go hiking next week, I guess I won't ...

With normal sports injuries exercise is part of rebuilding the damage muscle or tendons.  With FQ damage, the collagen breaks down quicker than it can be replaced, plus the repairs come back any old how rather than in a linear arrangement.  There's a paper called Fluoroquinolones and Tendinopathy: A Guide for

Athletes from the National Athletic Trainers association - you should be able to find it. Other bad news is the damage might just be starting with you - I would definitely recommend you don't do anything that puts a strain on any muscles for a while.  One of our UK stories is from a woman whose Achilles ruptured while she was washing the dishes!

Thanks!  I found the article, and I'll definitely take it easy for at least 6 months.

I just want to add my experience. My life has been ruined, super fit to semi disabled with cipro. Dr does not want to know. Dr knows nowt about the permanent damage. not a good situation, damaged and ignored 4 yrs.

 

Hi John,  very sorry to hear your experience.  I really feel bad for those of you out there, and how the doctors ignore the the possible links between cipro and its damaging side effects.  I guess now there is more awareness among doctors (at least in the USA), but really too late for a lot of people which this doesn't seem to have a cure other than maybe time ...

I'm not very fit, but I do like to stay moderatively active to stay healthy ... I'll put that on hold for a while.  I do feel random pain and sometimes headaches now (no where comparable to other cipro side-effects! so far) -- not sure if it's related to cipro but I never have headaches before.

Take care ...

Hi John, don't know if you're active here but what exactly is the tingly sensation you had? I took one pill of Cipro and started to feel something similar in my leg from knee down to my feet. I stopped after that one pill and tingling stopped in calve area and now just feel it on bottoms of my feet but oddly just when I'm sitting. If I stand up...i feel just about nothing and normal. I dont' know if I've just been sitting to long on this sofa of mine in afternoons or I actually did have that side effect. Did your tingling happen all the time no matter what you did?

John I know this is a very old posting but I am wondering how you are now. Harriet x

Hi Derek,  I don't think there's any actual conclusive way of identifying any cause of neuropathy - I assume the docs look at and eliminate the possible causes until they can point the finger at one in particular.  Various drugs can cause it (and other things e.g. too much vit B6 can do it) and various conditions such as diabetes. 

If you've recently taken a course of a fluoroquinolone antibiotic but otherwise nothing else, and are now sufferent from neuropathy, I would hazard a guess that the FQ is the culprit.  If so, do you have any other symptoms?

Unfortunately I have been give fluoroquinolone  on many occasions over at least the last five years before knowing its dangers. I have had it for prostatitis and urinary infections and in hospital after a heart valve replacement and again after a pacemaker fitted.

After the heart valve replacement I was surprised to have tendonitis symptoms while still in hospital and when home with minimal exercise.

At that time my GP referred me to a physiotherapist.

I first had tendonitis about twenty years ago. It was probably a coincidence but I remember it started soon after being prescribed Securon SR (Verapamil) for hypertension and I took that until 2013 when my heart rate went too low.

I had suffered from time to time with 'numbness' or lack of feeling in my left foot when walking but it was not in any way disabling. Suddenly over a ten day period in June of last year it worsened and I could not cope with changing pavement surfaces, uneven ground or the camber on roads when crossing them. I also could not cope with downhill slopes.  Since then I have not been out on my own as I need support when walking.

At that time I was taking Bisoprolol and stopped with only minimal improvement.  I have been to a neurologist and had every possible test including for genetic problems. I also had nerve conduction tests that only produced a comment of idiopathic neuropathy and probably lumbar spine related. I had a CT scan that that I gave him and he said that I should see a neurosurgeon. The CT showed nothing of consequence on my spine apart from normal ageing so he wanted an MRI. Nothing there either and he suggested a neurologist who specialises in neuropathy.

They are very who specialise and none in my area of Sussex and not many in London either.

I saw another spine specialist this week who although I now have back pain that I put down to my change of gait found no reason for the numbness that is mainly only when walking outside with shoes on. I get around the house OK. There is a definite weakness in the tendons and muscles in my lower leg. 

Hi Derek, if you've been given several courses of a fluoroquinolone over the last 5 years it wouldn't be at all surprising to find that your neuropathy had been caused by it.  The toxic affect it cumulative and many people can tolerate multiple courses without ill effects while for others it just takes 2 or 3 tablets. 

When you say fluoroquinolone, do you happen to know which one or ones you've been given in the past?  I agree that your back pain is probably caused by the change in the way you walk, but have you experienced any other pains?  

The fact your tendonitis started so long ago makes me think that the FQs are not to blame for that.  As I said before, there is no test for quinolone toxicity so it's all down to detctive work.

 

The first time I had tendonitis was in 2001 when  we were on holiday in Devon and walking a lot so that was probably it. Also it took a long time to get an NHS physio appointment.

From memory but there will be others prescribed I was probably not aware of. 

Cipro September 2011  

Quinolone after heart valve replacement May 2012  

Ofloxacin for ten days after prostate surgery in June 2013  

Cipro April 2014  

Cipro 10 days December 2014   

Quinolones after pacemaker fitted July 2015    

Have you ever thought that you could possibly have candida having taken so many antibiotics ?My husband is on a course of antifungal medication hoping to get rid of the yeast overload in his body.

Candida can present joint pain CF and many of the same side effects as FQ's.

I forgot to mention that I read of somebody who had chronic bad back and sciatica and was treated for candida with an antifungal medication and his back got better I can't think of where I read it but it was definitely searching Antifungal medication fluconazole

I don't have any of the candida signs or symptoms.

Thank you.

Hi Derek, 

That certainly is quite a few courses of Quinolones.  Just to be clear, Quinolone is the parent name of this group of drugs, fluoroquinolones are like a sub-branch and they include Cipro, Ofloxacin, Levo, Moxifloxacin - and there are plenty of other generic names as well. 

I very strongly suggest that you ask your doctor to put on your notes that you should never be given and Quinolone antibiotic ever again.  Your symptoms don't sound to be too bad from what you've described so far, although I can imagine the neuropathy is very disturbing for you - and I know it can be very painful.  If you take any other Quinolone in the future it just might tip you over the edge into the dreadful world of pain that many sufferers are in right now.

Also, be careful to avoid NSAIDS such as Ibuprofen and steroids e.g. prednisolone.  You might be tempted to take Ibuprofen for the pain, or might be prescribed a steroid but both of these can exacerbate the pain or even start off symptoms you didn't know you might have.  Some people find they're ok after taking the antibiotics then they take an Ibuprofen a few moths later and - bam- everything kicks off!

Have you been to a physiotherapist about your leg pains and weakness?  If you do see one be sure to mention the Quinolones as the method by which a physio would treat a sports injury is very different from how Cipro-damaged tendons should be treated.  Regular sports-injury type therapy could damage your tissues even further as they will be very weak from the Cipro.  Slow and gentle are the key words for exercise - you basically need to give the tissues time to rebuild themselves (they may always be weak) but keep moving enough so nothing atrophies - a delicate balance.

I hope this is useful, and also Gillian's comments below are very valid as the Quinolones can affect your gut lining for a year or more, meaning you may get problems but not realise why.  If you've felt 'unsettled' inside, natural yoghurt will help replace the good gut flora, even if you know it's not full-on candida.

 

Neuropathy is the term that doctors bandy about for want of something better. I don't have any pain, heat, tingling or pins and needles in my lower leg or foot. I just have a weakness in the area above the heel and behind the lower calf and a numbness in my foot when walking with shoes on.

My symptoms may not sound bad but I cannot walk unaided outside. I avoid all anti-inflammatory drugs due to a long history of stomach problems and two duodenal ulcers. In fact I had another barium swallow X-Ray this week with nothing apart from the small hiatal hernia and reflux that I have had for 30 years. I have always eaten plain natural yogurt.

I went to a physio after my heart valve replacement four years ago and again about two years ago. They mainly did massage of the tendon area and ultrasound. I later bought a Snowden arthrosound ultrasound device that did not help and returned it after the agreed trial time.

 

Hi Derek,  I'm at a bit of a loss now as to what to say regarding Quinolone poisoning.  Your symptoms don't particularly sound like Quin damage except for the tendon/foot problem.  My guess would be that you've suffered tendon damage at some stage and it's healed 'wrongly' leaving you with this weakness and numbness.

  When tendons heal after a normal injury they realign themselves and form bundles and fibres in the proper manner, perhaps not as strong as the original but good enough.  After Quinolone damage however, if they can repair and rebuild themselves (which isn't always possible), they do so in a haphazard manner  resulting in a lot of weak areas (think of a very badly darned sock!).  These areas are often too small to be revealed by ultrasound so no surprises that nothing was revealed. 

When you say you can no longer walk outside unaided, do you mean you need sticks or a frame, or do you need someone with you at all times?  Have you seen an ocupational therapist?  They would be the people to give you the best advice on how to improve your walking and your confidence in how you walk. 

The thing is, much as you don't want to accept that this is how it's going to be from now on, it might well not improve - or it might do but not for some time yet, who knows?  You seem to be doing everything you can and you're asking the right questions but the answer is sometime very elusive.  Maybe to do the best you can with what you've got is the way to go and any improvements that happen will be a bonus!

Don't forget to NEVER accept any Quinolone ever again - there will always be an alternative (unless you really are in a life or death crisis with anthrax or something).

Good luck and I do hope you see some improvement soon.

The problem is that although I had occasional numbness it was not disabling as it is now. Also it suddenly worsened over a nine day period. On a Monday I was out at a horse Show and on my feet for five hours. On the Friday I was at the races and on my feet for seven hours. It did not gradually worsen. One day I was suddenly having difficulty in walking. My wife was going somewhere and I  had problems walking to the station with her and coping with changing surfaces. The tiled floor of the station was suddenly like an ice rink. Going home I nearly fell a couple of times and was using walls and railings for support.

I hold my wife’s hand or arm for support and do have a walking stick but I was using that long before as I sometimes have a panful knee on the other leg due to some arthritis but not enough to need a replacement. I did have Perthes Disease as a child and initially though that might be a factor but am assured that there is no connection and basically my hip works well but does not look so good on X-Rays and told that I should never need a hip replacement. I started by seeing a podiatrist but she thought that the problem was from my lumbar spine. Orthopedic consultant had X-Rays of foot and lower leg that showed no problem. Like my mother I do have a narrow high arched foot and my toes have are stiffened up over recent years   

The wheeled walking aids seem too light and feel as if they will run away from me. A big heavy supermarket trolley is OK as it is more stable but I cant cart one of them around with me.

I have not seen an occupational therapist as like others (and myself) find it strange that I can walk around the house and perform more or less any task and it is not until I am actually walking outside with shoes on (a different gait then?) that the problem actually starts. I have asked about a standing X-Ray when there is more pressure on my spine but told that it would not  show anything different.  

Hi Derek, I don't know if anyone else has any futher thoughts about your walking problems - maybe try posting on a differetn thread?  If it is quinolone related (maybe the tendons were damaged by a quinolone and haven't repaired properly) there is no treatment apart from time and rest so I don't really have anything else to offer apart from stay clear of further quins plus avoid NSAIDS and steroids if at all possible.

You should be able to get help and advice by asking for a referral to a physio ot OT.  In most areas I believe they have a range of equipment for you to try and they can make sure you use whatever is best for you  safely.  The walkers, although lightweight, come with brakes so you should never feel that it's running away with you - it would just be a matter of being shown how to use one properly, get the right height for you (very important) and getting used to it.  don't buy anything without getting profesional advice first.

A professional shouldn't find it 'strange' that you can wlak indoors ok but not ouside.  Just consider how familiar you are with every inch of your home's floor, then compare with all the different levels, textures and (literally) pitfalls that there are outside.  The slightest camber on a pavement will throw you off balance while every uneven paving slab is waiting to trip you up.  

Ask for a referral and get professional advice.  Lay it on thick when you're asking by telling the doc how it's ruining your life etc, otherwise you won't get seen for months!  (been there, done that!).

I have twice been to an NHS Physio since July 2012 partly for that . Then of course not connecting it with medications.

My GP knows of my limitations and sees me walking actually his wife is a physio. I went to one privately but she was not inclined to treat me as she felt that her minimum session charge was too much for time needed for the treatment she did! 

This morning at home I stripped the beds turned the mattresses and made the beds. Filled and emptied the washing machine twice and hung up the washing plus a few more things around the house without a problem. But when I go out  in half an hour it will all be different.

I started by posting this problem last year on three or four other groups on this Forum with people with similar problems. Also on some spinal groups. None have ever really recovered.

I'm fortunate in only having fallen once. Banged my head, broke my sunglasses, and hurt my knee and wrist. It also cracked the bottle of wine we had just bought. My wife took it back into the shop and told them the bottle was leaking and got a replacement.

If you are in the UK you may know that Arthritis, joint and back problems now all go through MSK set up at great expense in areas and is totally useless. If you thought that the NHS was over managed this is much worse. Our local office has 23 people in it and none with a medical background. Appointments are farmed out to various locations private and NHS usually not the most convenient one for the patient. The doctors and consultants you see do not even like the system but it pays them well after or before their NHS day job. 

DErek How are you now?

Other drugs apart from the quinolones can cause the same signs and symptoms. Calcium channel blockers, statins , prosac . Best to research every drug you have taken and try to construct a pattern . Having said that the quinolones can have an immediate adverse effect or appear after months, even years.

Avoid any drug containing fluoride as well as fluride of course. Take care.