Have bronchiectasis with pseudomonas ... Been actively treating it with ACBT / AD.. And azithromycin for 1 year now.Had 2 flare ups( not sure whether first one of them was for sure) First flare up had to stop Ciprofloxscin after 10 days because of awful heartburn. Recent flare up managed to tolerate the Cipro by taking PPI at same time ....consultant recently suggested I start nebulized colomycin.... In part because I am a carer for husband with advanced Parkinsons, and need to stay well / out of Hospital. Also apparently have 2 types of pseudomonas ( didn't know there was different types🙄) & also because he thought I may not tolerate this last round of Cipro ( which I did) I'm not sure of the benefits?????
I am & have been active & & well . Have appt next week to try it out 😬Would really like to hear from regular users ...can I just take it for a few months?Do you feel better for using it?Do you bring up less mucus/ still have to do rigorous clearance?Is it a pain when going away/ traveling? ( Can you miss the odd one??)Sorry for all questions.. Just not sure I need to start this just yet .......,
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Phill1
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Sorry don’t have anything useful to add but am following because I’d be interested to find this out. Im at the stage where I am having back to back pseudomonas infections because my bronchiectasis isn’t diagnosed or being managed properly (have an apt next week with specialist thankfully) but didn’t realise cipro can give you heartburn, that explains why I keep getting it!
heartburn is awful... So recent bout I was prepared.. Took Omeprazole first thing am 30 +minutes before breakfast and always had the Cipro with a meal. Still getting a bit of heartburn but Planning to stop Omeprazole today / take gaviscon as and when& hope that'll work again for next time.
Any advice on heartburn remedies gratefully accepted!
Hi Phill! Hmm yes I see your dilemma. On the whole, in your situation I too would be tempted to maintain on the cipro as long as I possibly could, it’s so much easier. But having said that, acid reflux is very damaging to our lungs so if the PPIs don’t completely suppress it you could be unwittingly storing up more grief. How often do you need cipro and could you take a double dose of PPIs when you do? Also, why is the consultant so keen on swapping you over? Maybe there’s some microbiology reason to do with this 2nd type?
I developed a severe intolerance to cipro so have been on colomycin over 10 years. It keeps pseudomonas under control most of the time & my lungs are pretty dire. But I still need IVs once or twice a year (which sometimes I do at home but in the last year, because of both pseudo and other lung problems, I’ve probably spent about 6 weeks as an inpatient).
I never miss an airway clearance session except on my birthday & Christmas Day I sometimes do one instead of two! But if I miss one I pay the price in worse breathing so it’s not usually worth it. I almost never miss the colomycin either, because I’m so scared of resistance. So basically you have to fit your life around it.
I can’t deny it’s a pain, nebulising each dose only takes about 10 mins but then you have to wash the equipment, boil it weekly, the compressor is heavy to carry around etc. (I’m lucky because I got given an expensive portable one at the outset but apparently these are now reserved for cystic fibrosis patients, to whom we are the poor relations!)
If I were you, I’d go for the challenge test and find out if you can tolerate it first. It causes bronchospasm in some people. You can always tell your consultant you’d like to give the cipro one more go? I think it’d be perfectly reasonable, after the test, to say you want to discuss it further before you make the decision. That could just be a ten minute phone call.
I don’t know if this has helped much! It’s difficult because you sound quite a well lady but you have your husband to care for so can do without extra burden on your time! Then again, you need to stay out of hospital at all costs. Whereas I’m pretty unwell a lot of the time and my husband does a lot for me, eg he washes all my equipment which is a big help, and in my life occasional hospital stays are inevitable.
I hope you’ll let us know how you get on. It’s a lovely group with lots of experienced patients so you’ll get a lot of support here.
I am generally very well and still play a bit of tennis/ badminton / walk a lot (on the flat🙄)
That's why it's a dilemma for me. Consultant not aware that I tolerated there Cipro ok last time so it was suggested on the evidence of previous bad heartburn/ 2 types of pseudo and the fact that I needed to keep out of hospital to look after hubby
Was thinking of delaying the start but last few nights have been waking up needing to expel mucus. Nothing else going on of going on (yet🥴)
but as only finished Cipro 2 weeks ago ..will now go to appt on Monday to discuss with nurse. I've not been sure with exacerbations in past as still functioning well.. That's also a dilemma for me
It is a great forum .. I still fell a newby with all this even though it's been a year ...helped me a lot so far
hello Phill1. A lovely reply from eleanordigby. Bronch is so complex to treat and we are all different. As one of those on this forum who have lived with it for a lifetime and have gone around the medical and drug merry go round many times I can say that it is a matter of finding the the right treatment and self management to keep yourself stable.
Most importantly is the need for a good bronch specialist. Not reliance on the GP or a general respiratory consultant, neither of whom have enough training or experience in our condition. So if you don’t have one, get one.
The idea of nebulised antibiotic is to keep the numbers of pseudo down low enough to be able to lead a normal life, not to deal with an acute exacerbation. The way in which the antibiotic is delivered to the lungs is not aggressive enough to tackle the numbers of pseudo which have bred so much as to cause us to be unwell.
Exacerbations need the ubiquitous cipro ( doxicyclin and azithromycin are not trully effective) and if cipro no longer works or causes problems which cannot be tolerated, IV for at least 14 days. Then when the exacerbation is under control, a move to nebulised antibiotic. There are several which can be used. Yes it is a pain but can be integrated into a daily routine. I have nebulised various antibiotics, on and off since 1981. Through bringing up two children, running a manufacturing business, going back to university and now in happy retirement as a guide at a local heritage site. It can be done and can help to give a stable and full quality of life.
Unfortunately, I have come to the point where inhaling any antibiotic causes me breathlessness (broncho spasm) and so the alternative if I have an exacerbation is IV or the horrors of cipro which amazingly still works in me. I only nebulise ventolin and isotonic saline daily and do scrupulous lung clearance. To the surprise of my consultant I have stayed exacerbation free since last January. See how we are all different?
If you are struggling with an ongoing exacerbation and can’t take cipro I would say that your consultant should be suggesting at least 14 days IV (many of us can do it at home now). Then to continue on a permanent basis with nebulised antibiotic. Yes you can miss a dose now and then and some people nebulise month on, month off or give up during the summer months. You actually know your body’s reactions better than any doctor and can work this out for yourself.
I hope that you have found this useful and that you find what suits you best.
I am under a BE consultant at QE Bham.. But just as I thought the recent Cipro (finished 24th Nov) had done the trick ... Not sure if I'm having another exacerbation🙄🙄 how can things change so in a matter of 2 days!
now bringing more up .. especially at night. It's .tiring.. ... But feel fine ..except uncomfortable fuller feeling in affected lung. Same color ..not had a cold/cough ( can exacerbations happen without a cold /bug first?) Or can a lung just feel uncomfortable for a time
Anyway Glad I've got the nebulizing starter appt tomorrow afternoon but not sure where this will now lead... Hope they can do something swiftly if needed 🤞
I am at Bham too. Have been since 1981 when the be clinic was at the General hosp. Give your consultant's sec a ring if you feel poorly. If you need IV they have a great home system, even arranging for me to do it through Warwick hospital. Good luck with the nebbed colomycin. Do let us know how you go on.
Could I ask what the Consultants are like at Birmingham please. I am getting disillusioned with my Consultant at Northampton. Are they specialists in bronchiectasis? Are you happy with the care you receive?
My consultant of many years at the QE is Anita Sullivan. She co wrote the bronchiectasis guidelines and was (maybe still is) co chair of the British Thoracic Society. She knows and is a colleague of the bronch consultants at The Royal Brompton. She understands me and my bronch very well. I think that there is another bronch expert there now also. Have a look at the QE website for the specialisms of the respiratory consultants. Good luck.
Tried the nebulizer .. It went ok except that I had a small rash appear on my neck later that night so waiting to hear from Nurse
Also... Doo not fancy using this machine I've been given.. Have to hang a pipe out of window .. Seems so cumbersome. Will be purchasing an easier one once / if I get started. Have you heard of using Promix with Phillips ineb? .. Or the Nebulafix?
Can anyone out there advice on best nebulizer ?
As for whether I'm having another exacerbation .. Think probably not as feel fine apart from bringing up more gunk last two weeks.. Middle of night a nuisance.. But I assume something else would have kicked in as well by now . Do bronchs get new norm as time goes? 🥴
hello Phill1. I’m glad that the test went well. I have to confess that in forty years of nebulising I have never hung the tube out of the window. Never poisoned my family or the dogs.🤭not that I am recommending that you do the same. You can get an attachment for your nebuliser which you put pads into. These take up the escaping moisture. My nebuliser is a Pari ebase. It is tiny, silent and produces an amazing ‘mist’ which floats into the lungs and has proved far more effective than the noisy ones that push out clouds of steam. It has it’s own attachment for a pad. Unfortunately it is very expensive but far better than any of the others , and there have been many that I have used. Maybe somebody who is using one of the other nebulisers with a filter can help you. Remember that not all nebulisers are suitable for antibiotic so best to check that.
thanks again LP... Haven't restarted the colomycin yet .. Still waiting to hear from nurse re the fact I had a rash on my neck come up on the first night..
However it's a toss up between the Pari ebase or Phillips ineb at the moment
They both look so much easier
I need to keep my life as simple as possible whilst carer for hubby who has Parkinson's & now a diagnosis of Melanoma...Lymph nodes to be removed hopefully before Xmas
That's interesting. Initially when I had pseudomonas with my bronchiectasis consultant said need to hit it hard but it keeps on returning.When I saw him in Oct I asked him about Colomycin but because my lung function tests were OK & I wasn't ill with it he suggested I leave it. He said it's a regime you need to repeat & it's 'messy'.
I think many bronchiectasis folk live with pseudomonas & only take meds if feeling poorly with it.
However, I don't know as much as a consultant but I would question it further. Mind you, I always question stuff, really don't like taking extra! I'm on azithro 3x weekly & with carbocysteine, nebuliser 7%saline twic daily & postural.
Maybe bronchiectasis folk who are taking Colomycin could come on here to put your mind at rest.
thanks Lfc.. Like you, I try to resist any extra medication if at all possible.. Hate being on pills & the fact that my lung function is good . However.. sod's law...just the last 2 days I'm feeling uncomfortable in my affected lung and bringing up more mucus last few nights (tiring😞) So don't know what's going on at the moment. ..??
😂I'm 11yrs in & still feel a novice. If the additional mucus doesn't settle down & is affecting you day to day, or sleep at night then you may need to take action.It is so hard to know. I used to panic every time I felt 'off' but accept it more now:maybe due to a change in weather etc.
As well as a sputum sample ask for a CRP blood test, shows inflammation. Anything over 30 on the result antibis prob needed. (back within a day) Also my GP let's me have Diazepam:says it's important to have sleep & I only take a half or maybe 1 tablet if I'm having a bad night.
thanks again... 2 weeks in and the only symptom still is more mucus same colour etc but waking me up at night to clear is a nuisance. Feel well otherwise.. only finished Cipro end of November so hoping nothing more develops 🤞
Hi I am new to the site but have been on Colomycin for 10 years. I am on 100million colomycin, the 200 makes me more breathless. I don't have a break from it. I have had 4 lots of IV antibiotics this year for the pseudamonus.
Always afraid to stop colomycin, so keep carrying on with it.
Colomycin has to be nebulised through an open window, by a hose, although you can get an attachment for your nebuliser with some pads, so you don't have to have your window open. Which is good in this weather.
It just becomes part of your every day routine. It is a pain when you go away, but there are portable nebulisers, although the batteries seem to run down quickly. I have gone away a couple of times and taken the wrong pipes with me. I now have a list of what to take!
I must add that even on the 100million I was getting a bit breathless, but the asthma nurse at my gp surgery prescribed Combivent to use after the colomycin and that has helped.
Thanks LMEI ... It's a great site.. I'm so thankful it exists . That info is very useful to me.. I'll definitely be going for a nebulizer with pad attachments!
I've been on nebulised Colomycin twice. The first time was for a couple years and after three negative tests for Pseudamonas I came off it again. Stayed off it for about 18 months (managed to get colonised with Staph instead 🙄) before the pseudamonas came back.
I went back onto nebulised Colomycin, and the consultant also prescribed azithromycin 3 times a week. Again I was on it for a couple of years, again after 3 negative pseudamonas tests I came off it again. I've been off it now for over 2 years, but still take the azithromycin.
The second time I bought the attachment and pads for the nebuliser so I could sit on the bed and nebulise it as I struggled with the pipe out the window, it was letting in too many fumes from all the woodburners around us (I have asthma as well).
I hope everything goes well at your appointment. xx
Hi Collienut I was interested to hear that the Colomycin has at least helped you get a bit of a break for a little while of pseudomonas. I wonder if you could offer any advice on my experience? I have just come out of hospital last week for my very first IV treatment stay and am now trying to cope with doing the two daily treatments of nebulised Colomycin as well as the saline nebuliser and Aerobika clearance exercises just before each treatment to clear phlegm. I’m finding it so tiring but would feel better if I was actually shifting phlegm as I was before the hospital stay. I have asked the Physio’s by email why I cannot shift mucus in the evening before dinner with my clearance exercises as I did before all this treatment and they just responded that some people shift less mucus after IV treatment. I am not shifting any however. Before Hospital IV treatment, I was not feeling that well for about a year but even when feeling ok I have always shifted a yellowish colour mucus before evening dinner. Never anything in the morning. Now I’m shifting nothing at all since treatment and it is worrying me.
Also, does Colomycin cause acid reflux as I’ve started to get that now.
I would appreciate any advice from yourself and anyone who has a similar experience. This is my first encounter with pseudomonas treatment as my previous bug was always staph aureus and easily handled with doxycycline. I find it all very overwhelming and worrying to be honest.
Hi stillmovin, I had a lot less mucus after two weeks of IV antibiotics and starting on Colomycin. When I eventually went onto Azithromycin as well I stopped producing mucus almost completely (originally I could easily fill two sputum pots a day). I'm only on Azithromycin now and still hardly any sputum, I struggle to get enough to put a sample in.
If you're feeling well, hopefully no sputum means the Colomycin is doing it's job 😊. I'm not sure about the acid reflux, I usually only have it if I'm coughing a lot (I have asthma as well as bronchiectasis ), might be best to check with your consultant, respiratory nurse or GP. xx
Thanks very much for getting back on this. I’m just concerned as it’s all so new and there isn’t a little Bronchiectasis advice fairy floating about on call to help me with these questions! That’s where this forum really helps out. I did send another email asking the question about no mucus to the hospital physios again yesterday and she called me up and said to just carry on with all the procedures that I’m doing and if I feel unwell at any point, to see the GP. Oh well.
I am at least relieved to hear from your good self that this can happen and I’m not the only one experiencing it. It is such a long road ahead with this pseudomonas treatment and I think that’s what is worrying me. I don’t think I could face another two weeks of IV treatment in hospital in the future as I found it exhausting. Some people can sleep ok anywhere but I’m a light sleeper and I have a lot of fatigue with Bronchiectasis.
Hi I’ve gone down the routes suggested by others above over the years 1) various episodes in hospital for iv antibiotics frequency about twice a year for three years (after various courses of oral antibiotics failed to make me feel better). 2) azithromicin 3 x weekly for a few years (still got a number of nasty chest infections) 3) currently- colomycin twice daily for the last 7 years. It has greatly reduced my number of chest infections. However I think shielding has played a large part in that also. The promixin has largely been successful and has kept me out of hospital only the odd oral antibiotic top up required. I believe I’ll be on this for as long as it’s effective.
Each route were effective for a number of years but every now and then the pseudomonas would surface in sputum test sometimes when I felt no apparent ill effects. So looks like I’m colonised with it. I can’t tolerate doxycycline so go for cyipro and make sure I have a two weeks course when I do have chest infections. These chest infections aren’t necessarily caused by the pseudomonas as other bacteria have shown up on my results during these times.
I still cough up little or lots of mucous no two days are the same for me. But the main benefit is that I generally feel better, less drained and body isn’t constantly fighting underlying infection. The promixin is simply suppressing the bacteria numbers enough for me to generally feel well.
Nebulising is time consuming especially if you’ve other nebulised meds to take, I take ventolin, muco clear and then after chest clearance take promixin and find the whole process takes 1-1.1/2 hours. please note if in uk and prescribed promixin (brand) of colomycin you can contact Philips respironics and enquire about getting an ineb machine - very compact and portable device to use instead of your nebuliser and all my nebulised meds can be taken with it -just use different chambers for different meds. This cuts down my total ineb time to 1/2 hour. My consultant thought it wasn’t possible for me to get it as she thought it was restricted to cf patients only I was assured by Philips as long as my prescription stated promixin I could continue to get the used of the ineb machine. It’s been a lifesaver for me. Will be great for travel and holidays. However it doesn’t suit me all the time especially during exasperations as you do need a bit of breathing work to activate the release. I’m now on ambulatory oxygen so don’t let that put you off. During exasperations I return to the nebuliser.
My final advice is to listen to your body… if something is working don’t change it. But if you feel the release you’re getting inbetween exasperations is shorter or suffering too much from side effects think about what the next steps are for your treatment routine.
Azithromycin (AZM) is an excellent medicine because it is antiinflammatory as well as antibiotic. Even when a flareup is due to a virus (or a bacterium not controlled by AZM the antiinflammatory activity is helpful.
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Bronch advice please!
Oxygen concentrator at home, advice needed
Antibiotic advice please
Advice on lung clearance devices please
Any advice
