Fluoroquinolone Toxicity Syndrome

Hi Xaquarii,

I just replied to Rahul above your post, so I hope you will read that too. 

I wanted to reassure you that it is very rare for just one Cipro pill to affect anyone very badly (it has happened but it left the patient in such agony they had to be rushed to hospital).  If you have taken one already, don't worry about it but you could take some dairy food such as a glass of milk  and get some live yoghurt to protect your gut plus some high-dose Vit C as an antioxidant.

From reading your post I can't understand if you have already taken one tablet or are getting anxious at the thought of taking it.  You would be unlikely to have an immediate reaction from one tablet unless you were truly allergic and went into shock. Cipro and the other FQs mostly work by causing damage to the cells that isn't noticeable for a few days or even a few months.  But they are causing the damage from the very beginning, even if it can't be felt.

You are right to be anxious and to do your research.  I would never recommend that anyone ever takes this drug unless they have no other choice to save their life.  You have other choices. Make sure your doctor has had a culture grown of your UTI and that he gives you an appropriate antibiotic.  Cipro should only be given if two other appropriate ABs don't work (but I still wouldn't accept it!).  I understand that you don't want to get sick at this time but I think you already understand that, if you have a bad reaction to a course of Cipro, you will be sick for a lot longer than the rest of this semester!

Your anxiety very probably is caused by your worry about the safety of this drug, your continuing UTI and your studies - it's a lot to cope with.  If you have only taken one tablet of Cipro this is very unlikely to be causing your emotional fears.  Stop worrying as it takes up too much of your energy.  Go back to your doctor and get the UTI sorted out another way.  You are within your rights to ask for an alternative (and you can always say you are allergic!).

Thank you for your kind, reassuring, and patient words Miriam! They are a great comfort in this time of great anxiety. I did actually take 1 tab yesterday, but was unable to properly attribute any reactions due to the anxiety. I had slight pins and needles here and there, but that could also be a placebo from reading obsessively about side effects for what was probably 10 hours. 

My doctor got back to me and prescribed me macrobid. My period started, however, and as I'm trying to avoid ibuprofen for at least a month after this cipro incident I'm just dealing with the pain and nausea the old fashioned way. I'm a bit reluctant to start the medication while on the first few days of my period, as they usually hit me pretty hard and I'd have no idea whether the muscle aches or nausea is from my menstruation or the antibiotics. 

My urine's been clear the past two days, and as the only symptoms I've had of the UTI were cloudy urine and urinary frequency in the mornings, I'm hoping it cleared up! The only reason I even knew for sure it was an UTI was because of the test I had done, and, well, even if it does relapse afterwards, as long as it's clear for my bleeding time, I'm happy. I just want to avoid taking the antibiotics at the same time.

I have some Yakult, I'll take that along with my usual cranberry and d-mannose supplement in the meantime. I'm pretty nauseated, so I'm hoping soylent and bananas will cut it for today. Thank you so much! 

Macrobid can cause peripheral neuropathy, hair loss etc.

It can, but I do need to take something for my UTI, unfortunately. Since I asked my doctor for non-fluoroquinolone antibiotics my alternatives were Macrobid, Keflex, and Bactrim which all have their share of possible bad side effects. I’m no subscriber of forcing myself to finish my medication if it reacts badly with me, so if Macrobid makes me ill I’ll stop immediately and let my doctor know and insist on having a second urianalysis with a culture done. I’m pretty young and most horror stories for Macrobid seem to come from those who are later on in life, so I’m hoping I can get this whole infection over with with minimal illness!! 

I think you said it yourself - you were reading obsessively about it for TEN hours?!!  It's a good thing to be well informed so I can't criticise but yes, I think your possible symptoms were either psychosomatic or from sitting reading for so long.  As I said, if just one Cipro tablet was going to seriously affect you, you would be in hospital in agony from it!  If you have never taken a Fluoroquinolone before and you are not actually allergic to them, it would probably take several before you actually felt any effects (which is why most people say they've taken the with no problems).

You sound well read about the other antibiotics as well. Bactrim, Macrobid and Keflex are all good but it depends on whether your infection is caused by a gram +ve or -ve bug.  The FQs are broad spectrum so deal with either type and are therefore very popular!  Most of the horror stories about the other 3 come from, as you say, from older people or long term use so a few days of something should be fine for you.  FQs are the only ones that have a cumulative effect in the body which is why so many people get adverse reactions with their second or third course.

The latest thinking on regular UTIs (in the UK at least) is to take ABs for only 3 days as this should knock out most things.  Your main problem would be if you have an e.coli infection which is very hard to get rid of and that's where the D Mannose comes in.  Have you been told it may be e.coli or are you taking the D mannose to be on the safe side? 

Go back to your doctor when you have finished the course (and period!) to have another culture grown to make sure all is well.  I think it wil be - and the bonus is that you now know all about the dangers of Fluoroquinolones!

Please join us in sending out warnings to others, everyone is at risk of having their lives ruined.

Be guided by your dr. The abs you mention can affect anyone irrespective of age.

DRs are reluctant to prescribe Keflex/cephalexin as it can cause C. Diff. |some hospitals refuse to prescribe it.

Hello, Miriam! As before, thank you for your calming and patient words. Usually my anxiety is manageable, but with school and being sick for so long, it seems to have spiralled out of control just a little bit the past two weeks. 

I have no idea whether he's grown a culture from my sample or not, as we have an online messaging system so I haven't seen him in person since my first check up. He sent me back my results that did indicate bacteria and then gave me the cipro, and then I messaged him asking for something else and got the macrobid. Although I'm terrified of coming back positive, I'm definitely going to go back and ask for another culture once I'm done!

I got the D-Mannose that's already coupled with the cranberry as I had read that it would be helpful for UTIs. I was scared since I had had my UTI for about a month before going in (I had extreme urgency the first day which eventually subsided, and by week two the only signs of an infection was the cloudy urine in the morning that.... wouldn't go away), and I went in because I was scared of it progressing even though I had no pain or fever. I've more or less spent the entirety of March being ill, and I wish I had gone in earlier if only to get the whole ordeal over with faster. At least I'm working on it now, I suppose!

And yes! I am, and will. Thank you  

 

I do hope it settles down and all is well again so you can concentrate on your studies. 

Just a word about what Harriet posted about C.Diff and Keflex, here in the UK our doctors are reluctant to use what they call the 'Four Cs' antibiotics as studies have shown they actually encourage C.Diff to flourish by killing off all the good bacteria which normally keeps it well under control.  The Four Cs are Cephalosporins (includin Keflex), Clindamycin, Ciprofloxacin (and the other fluoroquinolones, and co-amoxyclav.  Even more to worry about now!  Stay safe.

Hi again 

​I think it best that people know what the side effects are . Keflex. If someone is prescribed this and gets diarrhoea the dr will usually require a stool  specimen to rule out Clostridium Difficile and E Coli. There is no need for anyone to worry but to follow the advice of the drs except when they prescribe a fluoroquinolone for a non life threatening infection! Take care .

. 

When I took olive leaf with keflex I did not get diarrhoea

hi did u get it previously then?

 

Yes

Hi again Thanks for your reply. I cannot have Keflex because I have epilepsy and Keflex lowers the seizure threshold resulting in increased seizures but it is useful to know for others that olive oil leaf is helpful..x

 

Sad and relieved to have found this discussion.

I was prescribed 3 courses of antibiotics for a UTI, Macrobid, Co-Amoxickav and then Ciprofloxacin... I was trusting of the gp as the UTI wouldn’t did after the first two antibiotics however whilst at my wits end I took 8 days 2 x 500mg of Ciprofloxacin and I wish I could turn back the clock.

I have never felt so low, so nervous, watching and listening to my every movement, 14 days off of it, waiting to see if the clicking of joints that I did have before are going to become something more disabling. I too have seen an Endocrinologist, a Urologist and currently waiting to see the Cardiologist I see regularly as I have an atrial tachycardia that I’ve had for years anyway... my biggest worry tonight having looked at a couple of studies including one by the BMJ is that which discusses the increased risk of aortic aneurysms/dissections. Then I read all of the before posts and credit to all whom are fighting through but why on earth does this tablet get prescribed? 

Hi Suzy,

That's a very good question!  It certainly shouldn't have been prescribed to you as tachycardia is at least listed as a no-no.  You should have been safe.

Which country are you from?  This is important as in the US you may get help with advocacy and there are very many support groups.  If you're UK - welcome!  We are busy with trying to make a big change in Europe as the EMA are currently reviewing the side effects of these drugs.

My best advice to you is not to let yourself panic.  Do whatever you can to stay calm.  You don't say how long ago you took it but read the advice about supplements such as magnesium and probiotics (in dairy such as live yoghurt is good as the dairy may lock up any traces of Cipro left behind).

Read as much as you can about helping yourself - but please do try not to get stressed and worried about the bad things that you read.  Every one's journey is different and what happens to one doesn't mean it will happen to another.  Positive thinking is the best way to deal with this dreadful situation you now find yourself in.  Join a support group, there's is so much strength to be gained from 'chatting' with others who have gone through the same thing.

Stay strong.

Hi Miriam, thanks for replying to me. I’mbin the UK, I took the tablets over a fortnight ago now so I’m 15 days off of them and am scared it’s a ticking time bomb with my health now!

I’ve been taking diary like you say and multivitamins and minerals.... I just wish I’d said ‘no’ but trusted the doctor, I told him I had a heart arrhythmia too, I told him I took bisoprolol for it and he said that was ok?!

I’m waiting to hear from my cardiologist this week also.

I’m experiencing muscle twitches especially in my legs and abdomen - I did get these anyway like most folks do but they are more than usual. I toil to let myself go to sleep as I feel I’m drifting into almost a floating feeling.

I’m fed up and really angry with the gp.

Jesus said on the Cross " Forgive them they know not what they do " I am less forgiving about our medical practitioners.

Feel very let down and when you return with your concerns and further symptoms you’re treated with the word ‘anxiety’.... and yes there’s anxiety but it’s a result of what’s going on with your body! 

Hi Suzy,

Of course there's anxiety, and with Cipro there's panic and insomnia as well as it's part of what it does to you!

Have you got your packet leaflet still?  Take it with you to the cardiologist and show him the bit about not taking it if you have heart problems (you can print one off if you didn't keep it - or he can look it up actually!). I bet he'll say there's nothing to worry about and it will have left your system by now and all that - which isn't true, of course. 

The problem with these specialists is that they're such know-it-alls and hate it if a patient knows something.  I don't know how well you know him and whether he will listen to you but you could try  showing him things you've found out already.  Check out the Nature article listed at the top of the page, that may be worth showing him.

Tell him the European Medicines Agency are currently reviewing the side effects and that they're holding a Public Hearing about it on June 13th.  This will only be their second ever public hearing so he should think that it must be kind of important!  He can look all this up (he should really be aware of it but I bet he isn't!).

Also check out the groups listed.  You may benefit from chatting with others in the same boat.  The UK group listed at the top here has a good website and requires you to email them if you want to join their forum.