Hi, I was diagnosed with bronchiectasis in 2017, found it hard but slowly learned to cope with things the best I could.
One thing that I worry about is having too many antibiotics.
I always send a sample to my respiratory nurse then start antibiotics, but sometimes the sample doesn't show infection, but because of my symptoms (fatigue, increase in mucus production, a bit of chest pain) I'm told to take them as the nurse said it doesnt always show in the sample sent.
Last year I had 5 courses of antibiotics, my doctor is now considering putting me on long term. Does anyone share these concerns.?
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Heaven20
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Hello Heaven 20 and welcome. There are quite a few members with bronchiectasis. I am nearly 72 and have lived with it since I was three years old. Two things have kept me alive and given me a good quality of life. Scrupulous daily emptying of mucus from my lungs to remove the warm wet environment that bacteria love to grow in and speedy treatment when needed with the correct antibiotic in a high enough dose for the proper amount of time ( 14 days for oral abs ) or in the correct delivery method - oral IV or nebulised. Quite often in bronch, lab plates do not show up any bacteria but it is obvious from symptoms that something is having a party and should be dealt with swiftly. Never be distracted by things that you read about people being given too many antibiotics. That applies to normally healthy people. We bronchs need them and boy do we need them. It sounds as though your doctor is considering putting you on long term azithromycin. This is a good drug and very effective in preventing exacerbations in some people but sadly it is not effective against some of the bugs which get into us such as pseudomonas. Only trying it will tell. Bronch is very complex. Everybody is different and it changes all of the time. This is why I can't stress enough that you should be under the care of a bronch specialist. GPs and most general respiratory doctors do not have the training or experience to be on top of it and are frankly out of their depth. If you do not have a bronch specialist find one. They are usually based at big teaching hospitals. Take the name to your GP and insist on a referral. Don't take no for an answer. Any GP worthy of the name will be grateful for the advice that the specialist gives them regarding the drugs that you need and a specialist will have their own physio to teach you how to do your part in managing your condition. I hope that helped a bit.
Hello Littlepom, thanks for your reply, it's very reassuring to hear that you have dealt with this for most of your life and speak so positively about it, and Im not surprised you are quite an expert about it. I do clear my lungs daily and try to eat healthily etc.I do go to a respiratory clinic at my local hospital and the doctor I see (haven't seen since covid, just telephone appts) seems quite up to date with bronchiectasis.. I've recently had a repeat mri and he wrote to say it hasn't got any worse over the last 4 years so I'm doing something right. So yes taking antibiotics is a must as you say. I think its just the idea of our bodies building some sort of resistance that bothers me.
Taking them is necessary, and I have to accept that. I also suffer with anxiety and that doesn't help, I am trying to have a more positive outlook on things.
It all sounds good and that you and your doctor are doing all the right things. The concern about our bodies getting used to the antibiotics is much outweighed by the fact that we can't neglect to take them when we need them to prevent further damage to our lungs. If a bug becomes resistant to a certain antibiotic then another one is used. Also, prophylactic antibiotics such as oral azithromycin or nebulised antibiotics are very useful in keeping down the numbers, especially after a course of IV antibiotics has been used to knock an exacerbation on the head. A good bronch specialist will know all of this and decide which way to go. It's a bit like chasing a gob dragon. 😊
Hi Heaven, nice to meet you. Can’t add to what Littlepom has said but just want to mention that it’s the bugs which can develop antibiotic resistance, not our own bodies. If we’re colonised with a particular bug eg pseudomonas, that amounts to the same thing, but mostly it’s an important difference. One less thing for you to worry about 😉
Hello good morning Littlepom I have found out I got bronchiectasis since 2020 after having so many coughs and chest infections. I had asthma for years and when I saw my own Dr she said it could be copd I said I never smoked in my life but been around people that do. As my cough would not go away my doctor sent me to hospital and the nice lady doctor I saw at heartlands hospital Dr Turner she said its not copd after I explained everything and she said I think it's bronchiectasis but will not know until I have a ct scan and had two done and showed up it is bronchiectasis but I was just given 3 inhalers and carbocisteine 375mg to take twice aday. Last year I had about 6 chest infections and was given antibiotics but had few more after and do not want to keep taken them. I only saw the doctor once in hospital and just sent home to carry on with it. Since having covid last year I think it made my lungs a bit worse. I get out of breath by going up the stairs. And get a lot of chest pains. You was so young when you found out you had bronchiectasis I hope you managing well with it. My sister told me about you so I thought I message you myself. All the best take care
I think that you should either contact your bronch doc at Heartlands via their secretary as your treatment is obviously inadequate, or look on the QE website for the bronch specialist there. Take her name to your GP and insist on a referral. You can also phone her secretary and ask if she will take you on if your GP refers you. Then you will be armed when you go to your GP. Don’t take no for an answer. This is your health we are talking about.
Thank you Littlepom I will do I phone my Dr this week as only came out of hospital yesterday with having 3 kidney stones and they that small can't do anything with them have to see if they come out on there own. I was wondering if you got bronchiectasis we have kidney problems also. But I will speak to my doctor's as QE is far from where I live that's why they sent me to heartlands but I will look it up thanks for your reply
Hello heaven I'm foxy79 I'm 41 and I had serve copd broncechtisis emphysema respiratory type 2 odimia and pseudomnas I'm long term on antibiotics and streiods since 9 years I'm on spetrum. Each body each antibiotics I was on co-amoxcillve then Aztrmicine as time goes they build a resistance I have been on cotromoxole 960mg been on it for few years and perdiesoline I gave on 10-15ml then when I get a chest infection I go back up to 40ml then in few months I come down to 15ml and get a infection and start again with serve copd broncechtisis emphysema. It's all about how we maintain our health please keep yourself active have your medication listen to consultant maintain healthy diet as well take care good luck 🙏
My two penny worth. Following excellent advice from this community in the past about using AB, when cough & sputum increase, I use co-amoxiclave to combat symptoms. I live in France & find resistance from GP to prescribe AB. When I get them, I ration the use, control symptoms & have enough for the next time. Together with Omeprazol & carbosistine cough syrup, I manage quite well. My symptoms are mild but progressively persistent. Sometimes feel nothing is helping, coughing all the time, then quiet days, more walking, medication helping & on I go. I found a specialist at a teaching hospital who recommended treatment. I wave her letter at the GP when I hear the spiel about AB resistance. So far so good. Good Luck.
Hi Breester, I have a rescue pack of co-amiciclave after my consultant here in the UK found that amoxicillin wasn't clearing the infection fully, since the change of antibiotics the blood in my sputum has decreased, that is a good sign, I've been tempted to purchase a flutter devise to help with clearance, do you or anyone have advice about using one?At the moment I am just using the breathing (huffing) exercise.
Yes I was given (80€) one by the hospital. Never really worked for me. What did work was chest clearance by a physiotherapist. One time I remember so much was expelled I think I got 6m no cough no drugs. I have since gotten PMR & decided against excessive pressure on my body. In future free of inflammation I would consider going back to physio. Fr health system I found is very keen on physio rather than drugs in this instance.
Welcome to the forum, Heaven. I have bronchiectasis. I was put on Azithromycin a year and a half ago after a bad infection. i haven't had any problems with it and I haven't had any infections since. If that is what your doctor is thinking of, I would give it a try.
Thank you Albert's 56, i will discuss this with my doctor on my next appt, I only have an appt come through with my consultant every 6 months so I will monitor till then,
Hi, I take fostair, ventolin and saline nebs and Mr huff and puff for my bronceactsis, the year before last I had a lot of antibiotics due to infections was told if they kept coming they would but me on a permanent low does of antibiotics daily. Lucky I got rid of the infection in my lung 🫁 but it did take over a year. Good luck
Hi Guytane, yes that's the one I was looking at.. I do need to start more exercise too, the past year or so like so many others I haven't done much and just started back on my exercise bike.. Its a start....
I never liked taking antibiotics, but can be the lesser of two evils. Antibiotics kill your good bacteria as well as the bad though. I very often would get thrush, mainly oral but sometimes elsewhere. So, then on anti fungal medications.In 2017, I had 18 chest infections, but since in March 2018, the eradication of black mold in our home, have had none. Just had two lots of antibiotics since then to fight off sinusitis. Worth checking for black mold? This forms in dark, damp and warm places. It was our bathroom floor, due to the bath's drain leaking.
Some people get on well with the AB azithromycin, which one takes 3 days of each week. I didn't as it gave me terrible oral thrush; so bad I could hardly eat. One way of slimming I suppose!
Hello Lutontown, it sounds like you've been in the wars, I do suffer with a lot of allergies and rhinitis, which I think isn't unusual for bronchiectasis sufferers, when I m on antibiotics I also eat a lot of Fage Yoghurt which I find helps with keeping thrush at bay.A change in weather always affects the way I'm feeling, breathing etc.
Yes, I've started on antihistamines, as I find tree pollen affects me, and some trees start sending out pollen in February.I have an intolerance to cow's milk and its derivatives including yoghurt, so use goats milk. Job to find goats milk yoghurt , although have had soya yoghurt, which is nice but expensive.
It's soya that I'm allergic to it creates so much more mucus production too. I found that out a few years ago after eating out at a Chinese restaurants.Shame, one of my favourites.
It is definitely a learning process of finding out our intolerences.
I take fexofenadine for allergies, but I find it only takes the edge off slightly, but ever little thing helps.
I am afraid our GPs did not recognise my wife's bronch until we paid for a CT scan, and a locum GP was amazed that her bronch had been missed (for 20 + years). We again paid to see a top COPD consultant, and he put her on the low level azithromycin treatment that many on this list have.
Works a treat, no more problems.....other than old age!!
Hello Heaven,Firstly, I cannot fault the information you have been given. However, after a recent visit to my consultant I feel I should also add the following information. She wanted to put me on Azithromycin long term. It is apparently an excellent antibiotic for the bugs in my lungs. Unfortunately, I am partly deaf due to rhinitis and waiting for my ears to be drained and grometts fitted. She went on to explain that there can be side effects for some people taking this antibiotic which means it can often cause deafness. I don't want to go completely deaf I know it would be extremely bad for my well being. So after much thought and lots of answers from members on this forum (some have found it did cause them to go deaf and others who cannot praise Azithromycin enough) I decided not to go ahead and start Azithromycin. I contacted my consultant and explained the situation and she was quite positive and said there are other ones we can try which include possibly a combination of other antibiotics. As a result I am now waiting for her decision as to the way forward.
Hi Heaven20. I too have bronchiectasis and asthma, I also used to get lots of infections and then antibiotics. I was out on Azthromycin on reccomendatio of my respiratory specialist. I take 1 3x a week and since then my infections ha ve reduced 10fold. I would definitely ask about this . Its a permanent antibiotic.
Hello Starskyd, after hearing this from many people I will definetley mention to my respiratory doctor on my next appt. I think because my recent MRI scan showed that things were going OK and not deteriorating too much he's holding off as he said there could be side affects from the long term antibiotic, but it seems that its going that way eventually.All your comments have made things clearer and I feel more positive about things now 🙂
There are some side affects I agree, not having coughing all the time, constant infections etc are on the plus side my only negative is I now have tinnitus, it's bearable bug I have to weigh up pros and cons.. Good luck with whatever you decide
I have Bronchiectasis (or maybe not!!) I have all the symptoms Including the mucus build up then huff and I puff to get the darned stuff out!!Emphysema is my buddy My severe Buddy. I am treated for the Bronc with a long term Antibiotic But, I still get a lot of thick gunk that comes up.
My severe Emphysema is pretty well controlled most of the time but still makes it`s presence known
If you need long term ABs take them but talk over your concerns with a Brock consultant who specialises in the condition.
Hi, I take 250mgs of Azithromycin only on Mon Wed and Fri from November to April. I'm on my third winter of this regime and I'm overjoyed to tell you I've had no chest infection needing antibiotics since starting them. In fact because I'm not getting the incessant infections lasting months and needing several courses of antibiotics I'm more well than I was in every way. Whilst on the Azithromycin I take a capsule of 20billion strength probiotic. Good luck
Hi there it seems like you have it sorted, at least it gives the lungs a rest…does this mean you don’t have a build up of mucus or do you still need to do chest clearance ?
Hi Heaven, have you been offered Azithromycin tabs? You take them 3 times per week and they really do help bronch patients to stay well. When I was diagnosed 11 years ago I was put on Azithromycin straight away as I was suffering badly with recurring pnuemonias. I have been well ever since. Yes, if I catch a bug a well person might get over it quickly, with me it takes longer but I can still live a relatively normal life. So, no taking regular antibiotics does not worry me. Take care. Maximonkey
Hi, yes he has suggested taking long term antibiotics but seems reluctant at the moment, I’m feeling ok at the moment and have a rescue pack (co-amoxciclave) at hand.I find it’s getting that I’m taking them on average 4 /5 times over 12 months. I am going to discuss further at my next appt. Thank you for sharing ,take care .
Hi Heaven20, I think you have your antibiotics mixed up. Azithromycin are not the same as the antibiotics you take when you are infected. They work to prevent infections. I guess it depends how ill you feel. When I went on them it was a clear choice of take them or die. I was really very ill indeed and my GP thought I probably had only 3 months to live. Pnuemonia when your organs pack up is very dangerous indeed and I was at that stage. I am now so well my Consultant discharged me into my GPs care two years age. Take care and stay well. Maximonkey
Hi there 👋I was diagnosed c2016. After my initial seemingly continuous infection/s I had a long period antibiotic free…but I caught an infection early December 2021 and had back to back infections thereafter. Haemophilis Influenzae bacteria is the most common one but I did get Serratia Macscescrns too!
Had Amoxicillin …didn’t work…Doxycycline…then more Doxycycline and finally 14 days of ciprofloxacin.
I think AB is the only line of defence….Otherwise the bacteria can run riot.
Daily Airway breathing techniques (say 3 times a day minimum) and exercise (eg brisk walking) and trying to keep in good shape 🤞🏼
My respiratory team told me to think of AB in a different light to the general population.
I find trying to stay positive is not always easy but some good distractions if you have some may help. Good luck 👍
Yes, I do too, Heaven20. Two years ago I was hospitalised with my third bout of pneumonia & they said that they nearly couldn't save me. There was no sputum to test & blood tests weren't isolating the cause. I was drenched by antibiotic drip for five weeks. Thankfully the body survives if it possibly can. This winter I have had three chest infections. But what can you do, they have to be treated..?
That sounds very sensible advice and is quite normal. You are right to be concerned but stressing about it is counter productive. It all depends on your history of infections. I take nebulized Gentamicin twice a day, and take Azithromycin 250 mg three times a week. With all my other treatments, it has proved successful. To avoid infection and re-infection you need to clear as much sputum from your chest as possible. If you feel very anxious, you could ask for a second opinion. Hopefully you are being seen by an experienced respiratory consultant, specializing in bronchiectasis. My treatment is carried out by a multidisciplinary team, I am under a lung defence, a sleep centre, an immunity specialist, I receive extremely good treatment. If I feel ill but, do not believe I am infected, I still start my emergency antibiotics, many of us also have prednisolone as well. Unfortunately, with damaged lungs comes a bigger chance of a cold, for instance, "moving" on to your chest. Every time you are infected, further damage is done which can cause shortness of breath which, in turn, can limit exercise, which again can cause your lungs to compact, and so on, a downward spiral in your health can very well result. Lungs do not have pain receptors so your chest pain could be due to many other things , like coughing, inflammation etc.. Azithromycin is a fantastic anti-inflammatory and also a good second line antibiotic. I wish you well, good luck.
Thank you for that information, I did have high inflammatory markers before I was diagnosed in 2017, it was first thought I had rheumatoid arthritis but that was quickly ruled out, after my diagnosis it was obvious where the inflammation was coming from (Airways)
I see many have reported Azithromycin as a threat to your hearing, this is a very real possibility, that is why, only three doses a week are prescribed. The upside of Azithromycin is it is an excellent drug, I have taken it for many years, in my case, the beneficial effects have been magnificent. I had a Right Middle Lobe Atelectasis plus many other problems recently, with no discernable infection, I was treated with IV Aminophylline and Azithromycin upped to every day for ten days, this is a real risk but, the outcome was great. This is something you need to think about as it could change your life for the better, a high percentage chance of that. It is not advisable to take every day for too long. However, once damaged your hearing stays damaged, it will not recover if you stop them. Keep well, keep safe. I have put a link to a bronchiectasis advice and help site, you could peruse the posts, most of our concerns are covered, there is a vast bank of accrued knowledge which may help you, to get the full benefit you should join, there is no charge, I am "bubbly" on that site!
Have mild bronch and am 64. My specialist advised keeping off all antibiotics if you can for as long as you can. However, I have emergency pack on standby. Had a phone call and he was surprised that I have not had any infection in the 15 months since his last check. I put it down to daily clearing, organic diet (partly!), compulsive mask wearing, no visits to shops, pubs or restaurants etc.I intend to carry on wearing my mask as I feel that it will reduce other chest infections as well as protecting from Covid. Not bothered what people will think.
Good morning Heven20 I found out I got bronchiectasis in 2020 and I was getting chest infections all the time and coughs was given antibiotics but the last few times I had my doctor did not give me any as I know taken to many does not help. I get out of breath even walking up the stairs since finding out I saw the doctor at the hospital once. But last year I got covid and I think that made my lungs worse. How you coping with yours I am on 3 inhalers and taken carbocisteine 375mg twice aday. Last year had over 6 chest infections and have not been given antibiotics for once a week as I read so many people with bronchiectasis are on them.
Hi there, sorry to hear that, I have been prescribed carbocisteine, but I stopped taking them as I was getting a sore/dry throat. I do take them when I know I'm getting a flare up and they help. I don't understand, why hasn't your gp prescribed you with a rescue pack of antibiotics.I'm lucky that I didn't get covid and I'm sure this is making things worse for you.
I don't take antibiotics all the time just when I need them, 5 times last year, so my consultant is considering putting me on long term.. We will see, I feel fine at the moment. He seems reluctant to put me on long term and I'm in no hurry to go down that route. But will if he says so.
Hope you get the medication you need, bronchiectasis affects all of us in different ways. Mine is upper lobe and I'm doing my best to prevent things deteriorating.
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