I have just been prescribed Ciprofloxacin for a chronic chest infection and am concerned about all the serious side effects this has. Has anyone experience of this antibiotic please.
Has anyone taken Ciprofloxacin? - Lung Conditions C...
Has anyone taken Ciprofloxacin?
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organiclady
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I have been taking cipro since 1986. I have not had the tendon problems which are listed in side effects. It does make my mouth sore but for the benefit it has when I have a bacterial exacerbation it is worth it.
organiclady• in reply to
Thank you. Do you take it to treat pseudomonas infection?
• in reply toorganiclady
yes. I have also had nebulised antibiotic and IV antibiotic for pseudo over the years. I take them with food which helps to prevent acid reflux.
thank you again Littlepom. Sorry to keep asking questions but I am really concerned about taking this antibiotic. You seem to have suffered from pseudo many times over the years, how long does the antibiotic treatment last before you have another recurrence of the infection. I have recently read that cipro has become ineffective against pseudo now and I am wondering whether I should try another less "dangerous" antibiotic before I use this one.
• in reply toorganiclady
Once pseudomonas is in there, it lurks. Even if lab tests show none it just means that the numbers are too low to show up in routine lab tests. I have lived a full life with pseudo since the 80s. The object is to keep the numbers low enough to be able to feel well and live a normal life. Nebulised antibiotic on a long term basis is best for this. And scrupulous emptying of the lungs of course. If the bugs start to have a party, something more effective is needed. This is when cipro or IV comes in. If after 7 days of cipro it is not getting better my consultant recommends IV.Many lab tests can show that cipro is not effective but my consultant ( who is at the top of the British Thoracic Society) says that although it may not work in the lab plate it can often work in the patient. This is the case with me.
I have had only one or two courses of cipro in a year for a long time now. I have nebulised many different antibiotics over the last 30 years but now cannot do so because my lungs go into spasm. I have had 5 sessions of IV in my lifetime. 2 of these were due to exacerbation, one for pneumonia, one to cover when a heart drug gave me a haemorrhage and one after a cardiologist gave me a pneumothorax during a pacemaker insertion and nearly killed me.
I nebulise salbutamol and isotonic saline once each day and this has kept me well for a long time. The most dangerous thing for me is other people's germs, mostly viruses. Any exacerbation I get tends to follow having caught a virus.
We are all different and this is why we need a bronch specialist to help us work out what works best for us.
organiclady• in reply to
Thank you Littlepom, you have been incredibly helpful. I will have a think.
• in reply toorganiclady
By the way. Cipro is the only truly effective oral drug against pseudo. Some who can't tolerate it take doxcycyclin but it isn't as good.
Tdster43• in reply to
really clear and helpful account of your experiences. Thanks for sharing. I have used Cipro in lots of patients I look after and it is generally (but not universally) tolerated.
Little Pom has given you a response similar to my history. I’ve taken Ciprofloxacin more times than I like to remember, because was born with PCD and have had pseudomonas and other nasties partying in my lungs. I’ve had 7 iv courses over last 25 years. Currently i take one Azithromycin daily, and am pleased that 5 months on them has worked. My rescue is Ciprofloxacin, I have in stock, if I deteriorate, never had any adverse issue with them. I nebulise twice daily with Salbutamol and Saline, then do postural drainage. I have private twice weekly physiotherapy, helps lot. Thought NHS Guide lines for my condition include respiratory physio, it’s not available outside London. I avoid going into public places if possible, boring but hopefully will give me extra years, my mother lived until age 111. Best wishes, Jean x
Thank you Morrison10, I am feeling more reassured now. I won't start the treatment until Tuesday in case I do have side effects as it is the Bank holiday and the nurses strike is on.
I have rheumatoid athritis,interstitial lung disease and other autoimmune stuff.
Azithromycin and coproxamol usually keep me staggering along.
When I get symptoms of an infection I’ve got Dooxycline as a rescue med plus increase in steroids if needed.
The Doxycycline knocks me for 6, but it works.
In January I was admitted to hospital,I thought I had a heavy cold.
became unable to find my words ,talking gobble de gook.
Ambulance took me to hospital,not a stroke,thank goodness.
They took a swab told me Ihad got RSA a respiratory virus.
They kept me in for 6 days.
I was given co amoxiclav huge tablets,And they smell.
I took them and after a fortnight was back to my normal decrepit self.
When I’m put on a newdrug I don’t read the side effects,
I.take the tablets and keep an eye on things.
At this stage of lung fibrosis I feel I have to take the drugs and see ,so far it’s always been ok
Like littlepom I take all my tablets with food.
It helps with reflux and also makes it easier to take everything.
I hope you feel better soon.
Thank you. I've just bought some Manuka honey, mixed it with Turmeric, black pepper and lemon juice. Tastes great and it is supposed to be an excellent antibiotic. I will try almost anything to get my resistance to illness back. I am not used to this change of health.
hi, I was given Ciprofloxacin in 2018 to enable me to get out of hospial after an exacerbation. I ended up with a serious tendinitus problem. I could hardly get out of bed because of this though funnily my achilles tendon was not affected. My GP came to see me and told me I must be mistaken as it was a very rare side effect! I persevered taking them, worrying what would happen with my chest infection. I now have full rotator cuff and bicep tears plus finger tendon losses. However as many have stated they have been fine taking it. Hopefully you will be too.
Thank you
I never read the side effects of meds! They have to list every little thing to cover themselves!
Of course they do but that doesn’t mean the warnings are not valid. It is a personal choice as to how we make our decisions and I prefer to work on the maximum amount of information, whether true or not, to make an informed decision rather than one out of ignorance which is why I asked for personal experience on this forum.
Hi, Organiclady! I have also had tendon issues with Cipro…don’t think it is really all that uncommon…also more rotator cuff and biceps tendon than Achilles. But everyone is different. I find doxy and azithro excellent! And just a comment about lung physios: I have an excellent lung physio but she no longer ‘pummels’ me. Instead, she helps me to refine the lung clearance techniques I use along with nebulizing. This has been very helpful. And the type of nebulizer you use is important. I have the Pariboy and the eRapid (if I need something more portable, faster and less noisy). Nebulizing twice (or more) a day makes all the difference. Once a day just doesn’t cut it. I start to feel unwell almost straight away.
Thank you. Really useful information
I have used Ciprofloxacin and the only warning I would give is that it badly affects RA. I had to stop taking it when my joints became really painful, a well known side effect.
Having previously had a serious side effect from an unrelated drug prescribed for nausea called Metaclopramide I do read all the side effects of any new drug I'm prescribed and I was recently prescribed Doxycycline for a chest infection. I was horrified to read that one of the known side effects was "visual problems (sometimes permanent)" !!
Yes, I know it's rare but so was the reaction to Metaclopramide but I was the one in 10000 + who suffered badly from it and judging by the Group on Facebook who have all had devastating life changing experiences with it, it's not that rare and yet GPs still prescribe it and most of them don't even know about the side effects. When the GMC were consulted about my problem many years ago they said it was a new drug and yes they knew about the possible side effects but "the benefits outweigh the risks" !!
I'm sorry that doesn't help you with your question but it does make you wonder how these things get approved when they could potentially cause something far worse than what they were prescribed for.
Best wishes xxx
That is exactly how I feel. I have picked up on too many mistakes that have been made with regard to prescriptions, dosage, advice, etc. to just accept what I have been given and always read the contraindications. The specific bacteria I am trying to kill is pseudomonas which has become resistant to most antibiotics including Ciprofloxacin which makes me wonder if taking it is worth the risk They are grasping at straws in some cases. I am not blaming them in any way (except for the gross overprescribing of antibiotics in the first place which led to this crisis) I just don’t want to end up with more things going wrong with me. Thank you for your info
There is a Facebook page of people who suffer serious side effects of Cipro. A bit scary really so not for the faint hearted to read! Early this year I had Amoxicillin then Doxycycline to try and clear an infection. Purely by luck I had a routine tel appointment with the ILD department at the Royal Brompton Hospital. The doctor prescribed Cipro for 2 weeks. I took 8 days which certainly worked, so the rest are on standby in the cupboard. I can totally understand you being hesitant- I react to so many drugs. But so far so good, maybe it is a small proportion of people who react. I shalln’t take it again before I’ve tried lesser antibiotics.
It is very tricky isn’t it!
Thank you - I'll have a look at Facebook as well.
I took cipro for pseudomonas 12 years ago. No side effects and no pseudo since! Good luck.
Thank you
i was prescribed ciproflofloxin for repeated chest infections,within 4 days i had achllies heel and sciatica problems, stopped taking cipro but it took physio to get me right, i have been told by doc i am all ergic to it now
thank you all these experiences are really helpful especially as rheumatoid arthritis has been mentioned- I was never asked about that.
like many on here I've bronchieactisis and have colonised pseudomonis. I take cipro when I get a flare up. My advice would be to reduce any exercise you do during the time you're taking the mediccation, short gentle walks no running or gym for the duration. If you have pseudo then cipro is the only oral that will tackle it, even then may not clear it completely but knock it back for a few months.
thank you. Did you get any contraindications?
No.
Yes ! I’ve had It lots of times . It’s fine but everyone reacts to medication differently
Yes people do react differently but that is the concern as the consequences of taking this (and other antibiotics) can have bad results, some of which are permanent.
As I understand it, pseudomonas are antibiotic resistant. A sputum test will tell you if the bacteria causing your infection are ciprofloxacin resistant or receptive/responsive. When I have used cipro ( a lot over the last 5 years) I have not experienced any bad side effects
it's also worth bearing in mind whilst pseudomonas may show up as resistant to cipro in the lab it can have a different effect when taken in person so it can still be worthwhile taking.
Hi there, I'll be honest my experience with Ciprofloxacin was awful ... After the very first pill I took, I ended up in the bathroom throwing up from both ends ... and the worst thing was I couldn't get up, my legs wouldn't work ... it made me feel soooo ill .. I would never touch them again... I'm letting you know this because if my hubby hadn't been there ... God knows what would have happened... I'm not saying I would have died but I've never felt so ill in my life ...... I don't want to scare you but just don't be on your own when taking the first dose.. I also have been colonised with Pseudomonas, many times, ive also had Aspergillus and Staph A. and my stomach has decided its too delicate for oral antibiotics ... so when I do have an infection I've been having IV at home .. but this time I'm trying out nebulising Meropenem.. which is one of the drugs I usually have in my vein...
5 days in I've been ok so far apart from suddenly finding my hand slipping down and losing awareness briefly .. whether its a brief nap or whatever I'm not sure so I'm going to email my lung defence team and request a mask attachment so I don't lose my meds if I drop off again...
Don't be worried about questioning your fears if this was prescribed by your GP .. its your body and you need to look after it ..
I do hope you get the treatment you need x
Thank you Poppyshola that was very illuminating. As I said before GPs and nurses are not infallible, I have been prescribed 6 times the recommended amount of one medicine by mistake and it was only because I read the instructions thoroughly that I could question it and it was changed. I am not rushing into something without weighing the pros and cons properly and yours and other people's experiences have really helped give a balanced view.
I think I would be looking at the consequences of not treating pseudomonas with just about the only antibiotic that will keep it under control. Personally I read all of the leaflet on a medication and keep one of each for future reference. The only side effect I seriously take note of is the 1 in 10, I want to be in the best health I can be to enjoy my little grandchildren for as long as possible. I'm grateful that I don't have pseudomonas (🤞) and very sympathetic to those who do and the decision you have to make.
Thank you. I do look at the percentages as well and these seem rather concerning for this drug. It is a shame there is no alternative and even this one is not always successful.
Hi you’ve had some excellent advice here. If you have the dreaded pseudomonas the only oral antibiotic that can touch it is cipro. I had it many times and it made me feel rough but not so bad I couldn’t carry on. Eventually my pseudomonas became resistant to it. I then had two weeks of iv antibiotics and then went onto nebulised antibiotics which I’ve been on for nearly six years. Good luck I hope you get sorted.
I agree, the advice has been incredible, thank you all so very much. I still do not know what to do but will have a big think about it. I felt ghastly when taking Amox. and had to change to Doxy which made me feel a bit rough but seemed to work.
I wonder how effective this Manuka honey jollop I've started to take is going to be. It is supposed to be a really effective antibiotic but I can't find what bacteria it is good for. Still, I don't think it will do me harm and is very nice as a drink. We are very used to just taking tablets in the West but much of the world have different remedies which seem to be successful - the Japanese are notorious for having a long life, mind you their life style seems to be the cause of that. Thank you all once again, this is a great example of what this Forum is all about. xx
• in reply toorganiclady
if manuka honey could kill pseudomonas we would all be cured of our bronch and the honey producers would be billionaires. I have been hearing this dross for all of my life. All I can say to you is whilst you dither about taking the only drug that is at all effective against pseudo, those little bugs are having a party and doing more irreversible damage to your lung tissue. If you are really too worried to take it, speak asap to your consultant about having a two week course of IV antibiotic and then going on to nebulised antibiotic to keep the bugs down.
organiclady• in reply to
Perhaps you did not understand my original question Littlepom, I asked for people's experience of Ciprofloxacin, not advice on what I should do as I am more than capable of making decisions myself. Me, researching people's experience of the side effects of this drug being patronisingly described by you as "dithering" says more about you than me. You have absolutely no knowledge of the way I work, my background experience of antibiotics or, it seems of how other treatments elsewhere in the world work - please produce valid evidence that Manuka honey is "dross".
I appreciated your description of your experience of Ciprofloxacin and am glad that you were not affected by it but as you can see from the many replies I have had since, there are plenty of other people who were not so lucky.
• in reply toorganiclady
I fail to see what is patronising in suggesting that if, based on the replies you have had to your question you are too worried to take cipro, that you should seek alternative treatment from your consultant before the pseudomonas gets out of hand. We would all love to think that a nice drink of something innocuous will cure us of this difficult and debilitating condition. Unfortunately it is not going to.
I have been doing my best to support fellow bronchs on this forum for many years and part of that is telling it like it is. Others appreciate it but as you obviously don't I will leave it at that.
organiclady• in reply to
I am not going to waste my time giving a step by step explanation as to why the tone and wording of your email is patronising and misleading except to say once again you have failed to understand what I have said. I also will leave it at that.
I have taken it - fiurst time had a very mild tummy upset; after that nothing. It is very effective so at least give it a try. Tell you clinician if things are too difficult. As someone once said to me; if it can do you any good it will also probably tell you in some way.
thank you
I've been prescribed cipro several times now for chest infections and was fine. However I have had rotator cuff problems with my left shoulder and a subsequent frozen shoulder. Now wondering if that could have been a consequence of the cipro.
I took this antibiotic and it certainly didn’t agree with me ,my tendons seized up on the second day of taking it so it’s a no no for me .
I am sorry to hear that, thank you for your input
When you say your tendons seized up what did that feel like so that I can identify it more easily should they happen please.
I had it once, can't remember any serious side effects, I can't have it now for heart valve reasons.
Here is a good guide to side effects and who and who can't take it from the NHS website,
nhs.uk/medicines/ciprofloxa...
Thank you, I have had a read of it now and it was very useful.
Hi, I had a pseudomonas infection in January, was prescribed ciprofloxacin and after 3 days I had blurred vision in one eye so nurse said to stop taking, I was lucky it clear-up after taking my rescue pack of co-amoxiclav.I do worry about it coming back though.
Thank you for the information and I'm glad it cleared up OK
There was a review of this antibiotic in 2019 which changed the criteria of use in the light of further evidence. The link is for anyone who is interested in reading it. assets.publishing.service.g...
Hi I’ve had Ciprofloxacin & levofloxacin in the past and suffered with tendonitis in my Achilles, took ages before I could walk easily again. Seems I have a recaction to theFluoroquinolone family
Thank you, I am glad you recovered ok.
Yes, it is a very good anti biotic, many do not have serious or any side effects. Most drugs have the ability to produce side effects but they don't in most cases. You only hear about the awful side effects, but not usually about the many people on Cipro that are happy and have no side effects, we are all different. Unfortunately I cannot take them because my tendons tore, this is not good for me as I am colonised with Pseudomonas Aeruginosa. If your doctor has prescribed them, it is assumed that he knows the side effects so he believes that this is the best treatment for you. I would follow the instructions about how and when to take them but keep a wary eye out for any side effects. if you are really concerned tell your doctor, if you are still not happy ask for a second opinion, good luck. I am not a doctor, my thoughts are based on my personal experiences.
I know there are generally side effects but with this drug they seem more dangerous and more likely which is why I asked my original question. Thank you for telling me your experience it is very helpful
This is a list of side effects of levofloxacin;. It does not mean that you won't experience something different.
Agitation.
blisters.
confusion.
diarrhea (watery and severe) which may also be bloody.
feeling that others can hear your thoughts or control your behavior.
fever.
pain, inflammation, or swelling in the calves of the legs, shoulders, or hands, this side effect maybe what was experienced by another user, but they believed it to be tendon trouble. Ciprofloxacin is the only oral tablet that is effective against pseudo, so, I would take it as prescribed but just take care and simply stop when a serious side effect is noticed, however advise your doctor straightaway as he will need to prescribe something else, immediately.
redness and swelling of the skin.
I took it a few years ago and ended up having a reaction to it. I had severe tendinitis and was lucky not to have a snapped Achilles. It is a good antibiotic and the only advice I can give is if you take it and start to have side effects stop it straight away as I was advised by my GP to keep taking it! When I then saw the consultant a week later he was horrified I was advised to keep taking it as it can cause serious problems. I now can’t take ur again obviously 😊
Thank you for telling me how it affected you. Misinformation given out by doctors, nurses has to be looked out for, you really have to have your wits about you as soon as you start taking drugs.
I have had to take Ciprofloxacin for bronchiectasis and found it affected my RA very badly, a known side effect.
The doctor did not ask about my arthritis which I keep at bay with the Omegas so he may not have been aware of it. Thank you for answering my question.
I have recently completed a course of Levofloxacin and have experienced the kind of tendon issues descibed by the repondents here. Are these similar drugs?
Yes, I think any name ending with floxacin is from the same family. Thank you
I have pseudomonas and used cipro 3x now
It did give me acid reflux so I take a PPI at the same time and already take probiotics
Problem is that it’s the only oral form of antibiotic that is effective against pseudo so the only other option if you have a flare up would be IV abx via hospital . I assume IV antibiotics would also carry health/ side effects/ warnings ?
I took it for a chest infection. No side effects. Read the leaflet (I seem to remember having to avoid taking certain foods and other medications at the same time). Talk to your pharmacist if you’ve any particular concerns. Take care
I was prescribed that AB for COPD flareups and the third time I realised that was the reason why I had developed a nasty, itchy, very disagreeable inflammation of my mucosae- mouth and colon- my GP said it was not a known side effect and did not believe me. It was very unpleasant, but survivable, not as bad as some of the other side effects described above. Has anybody else experience something like that?
I was given Levofloxacin which I think must be similar when I was in hospital in march which caused the tendons in both my lower legs to rupture still have pain now
Sorry to hear that, did they rupture whilst you were in bed or when you were walking please
They went when I stood up one went and the other the day after
I have taken Ciprofloxacin, several years ago. I took it for Pseudomonas infection. I tried to keep going with it as it was the only oral drug available. Sadly, I suffered quite badly with tendonitis in my ankles, I even had physio whilst I was taking it to try and ease the problem. I am now considered allergic to it and don't take it. My pseudomonas is kept under control by nebulised Colomycin and Azithromycin tablets, 3 times a week and 5 times a week when I have an exacerbation. I really don't think this is a common reaction and it is definitely worth trying as it is good for hitting pseudomonas on the head and all will probably be well for you. Take care and good luck.
Thank you for your good wishes, going by the number of negative replies I have had it does seem to be more common than most. Glad you found a solution but if Cipro is the only antibiotic that can control pseudomonas how is it that you take Colomycis and Azithromycin to control it please.
I have had IV antibiotics in hospital in the past but now I have a maintenance antibiotic, Azithromycin, taken 3 times a week increased to 5 times a week if pseudomonas is present alongside inhaled colomycin antibiotic through a nebuliser twice a day probably for 3 to 6 months. These are long term solutions rather than a 2 week course of an oral antibiotic Ciprofloxacin. This plan works for me at the moment but everyone is different. Good luck.
I have taken various floxacins which disagree violently with the arthritis I have. I have not found that they have cured the pseudomonas infection I had ( a common bacterial infection with bronchiectasis but very resistant to treatment). I have just been given a nebuliser with Colomycin by my specialist and within two days was immensely better after 6 months of illness.
Thank you Shonkie. I managed to complete the two week course of Cipro but on the 11th day I started to feel pain in my ankles. As I had read other people's experiences with tendonitis, arthritis, etc. I was extra careful when walking and moving about. The cipro seems to have cleared the pseudomonas so far but I am not sure how long it will last.
Thank you everyone who replied to my request for their experience of this drug, it was really helpful to my research and enabled me to make an informed decision along with the other research I did. I will not just take medicines willy nilly because a nurse or doctor said I should unless I have gained as much information about it as possible and used this information to weigh up the pros and cons. Thank you once again
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