Advice requested on Pseudomonas / Bronchiectasis

Hi all,

This is my first visit to this site and I have come across some great advice already. I have had Bronchiectasis for a good few year now and can normally control infections with various different oral antibiotics. However for the last 4 / 5 weeks I have not been able to 'Shift it' and have felt feverish, exhausted and generally rubbish. My doctor called me this morning and said I have grown a bug called Pseudomonas and has prescribed me Ciprofloxacin ~ Is Pseudomonas a form of Pneumonia ? It sounds like it is a difficult bug to clear. Any advice would be very well appreciated. Also does anybody else have bowel disease alongside COPD ~ I have had a full colectomy due to Ulcerative colitis. I have heard of links between the two conditions.

Looking forward to chatting and hopefully hearing back from some of you

24 Replies

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  • Hi Moonbeams! Pseudomonas aeruginosa can cause pneumonia but not necessarily. However, it is a bloody difficult bacteria to get rid of once it has infected the lungs. It was first isolated in my sputum about 15 years ago but unfortunately neither I nor my GP at the time knew the correct antibiotic therapy for clearing it. As a result, it came back time & time again over the following years and now my lungs are permanently colonised with it. I have to nebulise antibiotics (colomycin) twice a day to suppress it (this does work effectively, though, thank goodness.) What dosage and length of course of cipro has your GP put you on? The usual "eradication protocol", for people with bronchiectasis, is to treat it the same way as in cystic fibrosis. So far as I know, there are two methods depending on the circumstances, ie EITHER 2 weeks of IV antibiotics, followed by 3 months nebulised colomycin and/or oral ciprofloxacin, OR cipro for 3 months followed by nebulised colomycin for 3 months.

  • Hi again Moonbeams. I just googled the current eradication protocol & came across this report from Royal United Hospital in Bath resmedjournal.com/article/S... which is relevant as it specifically refers to non-cf bronchiectasis. The protocol is set out under "Methods". It does say, though, that the protocol is invoked "typically after the second isolate of Pseudomonas from sputum". I hope this is helpful.

    I want you to know that although I've had problems with pseudo for many years, and am now colonised with it, I am well most of the time and still enjoy a reasonable life. It's far from ideal but it's certainly livable with, if you're careful. I cannot take cipro because it damaged my tendons, but I find inhaled colomycin very effective, and I also take azithromycin 3 times a week. I am religious about doing my daily physio too.

  • Hi Hannah, could I ask you how many azithromycin you take a week 250 or 500 three times a week ?

  • Hi carol. I am fairly deaf & have tinnitus so I just take 250, with a two-month break every summer. This hasn't worsened my hearing, but when I increased the dose to 500, the tinnitus increased. However it fell back to its usual level when I went down to 250 again.

  • Thanks Hannah I take it the azrythomicin you take for your lungs and not the deafness/tinnitus, sorry if I sound a bit thick but this tablet seems to be given for a few different reasons xx

  • Not thick at all carol, quite a few drugs have multiple uses don't they. Yes I take it for lungs. Apparently it has an anti-inflammatory effect, which creates a hostile environment for bacteria

  • Ah yes same reason as I do, thanks hanna xx

  • Hi Moonbeamsblessings. Welcome to the site. I have had bronchiectasis for all of my life and I am 66 now. Pseudomonas is not pneumonia. It is one of the bugs which we get in our lungs. Cipro is the best oral antibiotic to tackle it. Usually given 500 or 750mg twice a day for 14 days.

    Once we are colonised with pseudomonas it usually stays there but the aim is to get the numbers too low to show up in the lab or to make us feel rotten. It is also important that you make extra efforts to get rid of all of the gunk from your lungs whilst you are fighting it.

    Cipro has a very small risk of causing tendon damage. I have been taking it for such exacerbations since 1986 and only had a sore tendon once, about a year ago. It is worth watching though.

    I have diverticulosis, but then again, so does my sister who does not have bronch. Bronchiectasis is not COPD but somewhere along the line there does seem to be a link between these various forms of inflammatory disease. Not enough research has been done into it. I hope that helps.

  • I had to stop taking Cipro because of tendon damage and very painful legs. Now take Gentamicin twice a day in nebuliser to try and keep the Pseudamonas under control. Also have to send in regular sputum samples to make sure it is still effective .

  • I have great respect for the above answers as I have also found this site particularly helpful. I have Bronchiectasis and colonised pseudomonas and took Azithromycin 3x-a-week for the first time this winter following a 5-day stay in hospital last year for IV antibiotics (Tazocin). At the time the infection would not respond to anything else. I feel these Azithromycin keep it just under the surface and so chest specialist has decided to keep me on them for the time being. However, I saw him last week and he has taken me off the two inhalers I've had for years, and certainly before the pseudomonas developed, because he said that he thought the steroid in one of them does not help my pseudomonas. We are trying a newer, more sophisticated inhaler (just once a day) but can't remember the name of it now - I'm waiting for his letter to confirm all this. Also, you will probably need Carbocisteine to thin the mucus so that it's easier to get up - this is very important. It is a matter of managing your condition all the time. A physio once told me it is not a disease but it is a condition which you can manage. Good luck.

  • Claudine one of my inhalers is Symbicort, which has steroids in it, so I am very interested to know the name of the new inhaler your Specialist is prescribing for you, as I like you have Bronch & Pseudo.

    Could you let me know what its called when you get it Please?

    Thanks Love Sohara

  • Yes, of course. I feel so silly that I can't remember the name of it but the bill arrived this morning for analysing the sputum sample I took with me so I guess his letter can't be far behind!

    He did say that this new inhaler would only need one puff a day which is better than 2x2puffs of Seretide a day and 1x2 puffs of Tiotropium a day.

    I have also asked him to let me know what procedure to follow if I have an exacerbation over a weekend, holiday, after a flight etc. I've had a pack of Amoxicillin to start on myself in the past until I can get to see the GP but I guess that might change now I'm on the maintenance dose of Azithromycin.

    God, it's a minefield isn't it?! But, hey, we're still breathing!

  • Thanks Claudine. Yes it is a minefield, but luckily these days we have the internet and sites like this one, so that we can 'look after' our own health in many ways. When I was younger, not only was medical info practically impossible to find. Doctors did not tell you ANYTHING about your condition. When I had my lung ops at age 15 & 16 even my parents were not told a thing about why they operated, and what they had done ( they took out my lower lobes MAJOR ops) but that was 62 years ago when you got into trouble if you dared look at your temperature chart hanging on the end of your bed :) :)

  • Apologies for the lack of an answer yet. I STILL haven't had my confirmation letter. Waiting for sputum results apparently. Secretary says it takes longer than a blood test result - it depends what they're testing for. I thought if they leave it longer perhaps they're hoping to find something! Feeling frustrated but I haven't forgotten you.

  • Sohara Hey, guess what? My letter was emailed tonight! Letter to my GP says "to consider starting Duaklir Genuair 1 puff bd instead of Seretide and Tiotropium". I think my GP will agree because apparently this is cheaper than my present inhalers! He also suggests Ciprofloxacin 750mg bd 10-14 days if I have an infective exacerbation, with the fall-back option always being intravenous antibiotics. I've had this before and don't like it but then haven't needed it now for 3 years or so.

    Are you familiar with Duaklir Genuair at all?

  • Hi Moonbeams, Horrible for you. As other folk have said, it colonises the lungs and is very difficult to shift. I got it about 18 months ago and had to nebulise Gentamicin twice a day for several weeks to shift it as Ciprofloxacin didn't touch it. Some people don't tolerate Gentamicin and try Colymicin instead. It hasn't come back since but I understand it can and probably will.

    James

  • Wow ~ Thank you all so much for your replies ~ this is such a great community and so helpful. When you only see your consultant every few months there are always so many question to ask between those appointments and when you actually go and see him/her I come away and have not asked what I was meant to ~ DOH !! So I see that this community is going to be great for that.

    So I am on Ciprofloxacin / Azithromycin ( 3 times a week ) and Carbocisteine.

    I don't ever tell people about my chest condition and when they hear me coughing they say you should rest with a cough like that ..... but I think the opposite, although I feel I am climbing the highest mountain when just doing the housework I feel that any exercise I get is good as it helps to clear the lungs ~ although I feel rubbish and am taking maximum Paracetamol and Ibuprofen to curb the Shakes and shivers from the infection I do think that just laying it out wont help the clearance ~ what do you guys do in respect of exercise and also any good diet advice, any advice on what foods to avoid that increase the 'LUNG GUNK' ?

    Speak soon ~ Jax

  • I don't tell anyone either! What's the point? I look well, so very few people know there's a thing wrong with me, which is how I prefer it. Some friends have cottoned on to the fact I have a lung problem, but I don't explain, it's just too tedious :) Do you do daily chest physio? It helps avoid long coughing bouts in the daytime. My cough sounds disgusting, I hate it when I get a spasm in public. Before now, I've had rude people tell me I should give up smoking (I've never smoked.)

    I don't exercise with an acute infection (ie if feverish) as sometimes it can weaken the heart slightly (temporarily.) Otherwise, I get as much exercise as possible. Can't do anything heavy or strenuous but I do walk a lot & get loads of fresh air. It really helps clear the lungs. As for diet, I just eat as well as possible, loads of fruit & vegetables etc, but also chocolate when I feel like it ;)

  • Welcome Moonbeamsblessings there are several Bronch/pseudo patients on this site,( including me) and you have already had some very good replies from some of them.

    You have come to a very good site and we all try hard to help each other.

    Love Sohara

  • Great hearing feedback from people in same position, would certainly love to hear info regarding new inhaler thank you

  • Hi Moonbeams - welcome :) Ive been a member of this site since ?2012 and joined with copd. Since mid-2015 Ive also been diagnosed with bronchiectasis after a CT scan following bouts of pneumonia and the community were amazing at the time in helping me understand this diagnosis. Many experts here who will always help. Look forward to hearing more from you. Take care.

  • Hi I have bronchesis and only 1 lung after 2 bouts of lung cancer a few years ago and I also produce the bug pseudonomus and yes the only anti biotic oral type to fight it is the one the doctor has given you you should be on a rescue course of these antibiotics so you always have them in stock have a word with your doctor as that is the norm if they do not work then you will have to have a line put in your arm and intravenous ones will have to be given I do mine at home to save being in hospital it's quite easy once you have been shown how to do it best of luck make sure you take the full course and to see if it gets rid of it but it's sometimes quite difficult that's why I have told you at the alternative mick

  • Loved reading this thread ~ Well I have had just over a week on the Ciprofloxacin and today was my 'Big Shop' day ~ well I'm walking around as if I have broken my ankles, my Tendons are so sore and I was terrified that somebody would bang into the back of my ankles with a Shopping Brolly. I did read that you can have some soreness here but I really don't want to stop taking them the tabs. My chest did seem to clear a little after 3 ish days but its seems not to be improving any more from then.

    This Bronch/pseudo is no joy is it ~ My normal infections clear after a 2 week course of Amoxicillin.........not this stubborn baby tho ....

  • I replied to you Moonbeam but reply bit lost. But briefly my advice is STOP taking the Cipro. & make urgent appointment with GP for alternative antibiotic. Get in touch with your consultant for appointment as you may need IV ANTIBIOTICS AS Cipro is the main drug we can take orally for Pseudo.

    A side affect of Cipro is tendonitis which can cause tendons in the legs to snap which is worse r than a break. Several Pseudo patients on the site cannot tolerate Cipro hopefully one of them will come on to advise you soon

    Love Sohara

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