I have had bronchiectasis for many many years which has steadily worsened to it's current level. My lungs have been colonised with pseudomonas since last October. In July 2017 I had a spell in hospital after coughing up pure blood continuously for about 15 mins. That was due to an infection. I was given the 3 month elimination regime of oral ciprofloxacin, nebulised gentamicin and massive doses of celtazadine through a pic line. Needless to say this did not work as the little devils were hiding during the first two sputum samples, giving me false hopes. I am to decide whether to go back on the gentamicin nebuliser twice a day for life, (however long that might be!). I am now 65 and take azithramicin 3 x weekly and inhalers daily. I am concerned at having an antibiotic so often in case the pseudo becomes totally resistant leaving one less of a meagre few drugs to tackle it ? Can anyone who has either taken or refused this route advise me please?
I can't help you as I do not have your conditions, but there many here who do and will soon come along with advice and support. Welcome to the forum. It is very supportive. The members are well-informed, funny, and wise.
K
Hi there sooz. Well you see, we bronchs are all so different. I have been colonised with pseudomonas since 1987. The aim is to keep the numbers low enough that they don't cause trouble. Unfortunately, even if they are not showing as being there in the lab they are actually lurking. I think the object is to live with them and try to keep them in check. I live a permanentlyormal life if I am succeeding at this. My front line oral antibiotic is ciproxin 750mg twice a day for 14 days when I can tell it is having a party. I have had IV ceftazidime, tazocin and meropenem over the years but this only represents three hospitalisations in twenty years. I nebulised gentamycin in 1998 and ended up with my lungs stuck together and unable to breathe. I have nebulised tobramycin, gave me broncho spasm and colomycin which resulted in a terrible infection. At the moment I am nebulising ceftazidime which has been the best for me since 2003. I do it once each day rather that two so that I don't get wheezy. My consultant goes along with this as there is no convention that it has to be twice per year.The most important thing is to cough up whatever is down there.
So currently my plan is-, nebulised ceftazidime permanently, oral cipro at first signs of an exacerbation. If this isn't making me feel better my local hospital is willing to support me with IV gentamycin or meropenem administered by myself at home in cooperation with my consultant in Birmingham.
As far as not wanting to take long term antibiotics- forget it. Unlike normally healthy people we need them in large enough doses and suitable delivery systems for appropriate periods ( sometimes permanently)
It is a case of figuring out what suits you. Good luck.
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Hi, thank you for your experienced reply. I have today taken delivery of the neb stuff and will monitor it closely as I already were hearing aids and I know that Gent can cause deafness!!
Hi, I have a Philips iNeb and nebulise Promixin twice daily. This works well for me.
I also have an I-neb and nebulise Promixin (a brand name for colomycin), & take azithromycin x 3 weekly. I'm 65 too and have been doing this for some years. My aim is to suppress the pseudomonas as much as possible, to avoid flare-ups (which are likely to cause further lung damage.) I rarely get flare-ups, but when I do I have IV Tazocin as I'm allergic to Cipro, Ceftazidime & Meropenem. I've nebulised Gentamycin before but after 4 months it made me wheezy. Colomycin seems to really suit me. I don't worry about antibiotic resistance. I've raised this point with my consultant and been told it's highly unlikely with pseudo. I'm optimistic my current regime will enable me to live an almost normal life for many years to come. I fully intend to die of something else (but not for a long time )
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Hi, many thanks for reply. I can't tolerate colomycin so have Gent. Capri causes me probs too so I may need the IV at times. I am slowly gathering info from you all as Some things i have read on line have scared me a bit regarding pneumonia and sepsis? Knowing that others are managing this has helped me a lot. Ta
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These scare stories are all over the net so I don't google health info anymore, I only look at reputable websites eg NHS, CHSS, EMBARC, patient.co.uk & sometimes the CF Trust one. Keep yourself in reasonable health, with good diet & exercise, and I'm sure you'll be fine. Also, bear in mind for the future that there are other drugs you can nebulise eg tobramycin, ceftazidime. And a nebulised form of cipro is in phase 3 trials (so even though the oral version gives us problems, we might be ok with a neb.) Also there's a lot of research going on into inhaled forms of antibiotics.
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Thanks Hanne, I have been quite reassured by the advice and shared info on here. I have had bronchiectasis since childhood but not diagnosed till about 15 years ago. It was the coughing up of vast amounts of blood that first scared me and then a large clot afterwards. I was given plenty of tests at hospital but was told very little. Then to have pseudomonas and be told even less necessitated research on line! I have a brilliant service at RUH Bath which is virtually run by specialist nurses who are kind and accepting of self management. I find my GPs unhelpful and without solid knowledge of the condition so the hospital service is good. I had to make a fair journey twice a day to hospital for the picc to be fed with ceftazadime and that with oral and nebed anti bots at the same time was hard to do. My area has no community nurse service for that. I have concerns that cipro may not agree and there isn't a nurse locally to give me intravenous anti bots? Other than that I feel able to recognise a flare up now and act quickly but want to prevent it f I can. This blog has helped very much, Many thanks,
Recently diagnosed Bronchiectasis and colonizing Haemophilis. Had 2 lots of Doxycycline, each lasting a month. I too was worried they might stop working if keep being taken but having read this see this is not the case. Anyone else of the Haemophilis bug problem would like to hear your experience Thanks
I have the same thing. First sign of an infection it's high strength Amoxycillin and prednisolone for 2 weeks then I need to take Azithromycin for another 3 weeks to get rid of the nasties that have deeply set in. I did try the Doxy but it wasn't as effective. In theory the combo I take shouldnt clear the Hib but in me it seems to. Long may it stay that way!
Thanks for that. Had Amoxil too. You know /have any idea how u got the bug in the 1st place ? Got questioned about stuff like did I keep birds, live in damp house etc . I only found out got B'ect after routine chest x-ray following nasty flu that led to pleurisy. Had CT then sputum sample showed H'sis
Unfortunately I have no idea. Have always had asthma and Had a lot of chest infections that were never well treated and that caused the bronch. It seems that once you have something like asthma and/or bronchiectasis your lungs are much more vulnerable to these things. From what I understand Hib is one of the least worrying things to grow.
Did they say how spread the bronch is? The respiratory physio told me so many people are diagnosed with it now due to scans etc whereas before they would have been non the wiser. Pollution, bad air quality and the like must play a part in the damage too.
Try not to worry, now I look after my health better I get a nasty infection once/twice a year and whilst it's horrible to deal with and takes a good few weeks to clear, it's not the end of the world.
Please tell me you don't smoke! I try and avoid pollutants or irritants - bonfires, fireworks, aerosol sprays, strong perfume etc and make sure you do lots of exercise to keep your lungs moving. I've said it before on here and I'll say it again. Your lungs are like a piece of bubble gum, keep moving and stretching them and they stay supple and get good air flow in and out. What happens if you just leave a piece of bubble gum on the side?
Thanks again, after years of smoking am trying to quit, vaping now. Usually fit & active running around all day at work so it all came as a bit of a shock. The letter from hospital said mild Bronchiectasis am having another CT to see if any improvement after all the antibiotics. Yes you are right people only being diagnosed when investigating other problems, really grateful they ruled out Cancer.
Talk to your consultant to see whether you are suitable for the Colomycin nebs. I was on them for a while and they seem to have controlled the Pseudamonas for a while, although I still have other infections regularly, including the Streptococcus Pneumoniae bug a short while ago.
Thanks Mg!! I started colomycin when on the aggressive elimination programme but it made me more breathless so they chamged me to gentamicin which seems ok. I also have regular showings of staphlococcus A but that seemed to have been helped by the treatment programme. I had two clear cultures and then became ill and showed pseudomonas was still there. Apparently it hides undetected in the airways!! At least I now recognise the symptoms of a flare up, particularly a sensation of the smell of wheat when coughing. I wonder if this is noted by anyone else?
I’ve only been diagnosed with bronchiectasis about 4 years ago(I am 61years old) with multiple health issues. I’ve now had conflicting advice from GP verses respiratory team. My GP is reluctant to use antibiotics but my respiratory team told me to take antibiotics immediately my symptoms show their head again. I’ve heard this week that I’ve colonised pseudomonas in my lungs. I take azithromycin 3 times a week and just finished ciprofloxacin 750mg bd for 2 weeks. My GP told me not to re test sputum but respiratory nurse said test 4 days after completing ciproflofloxacin then I may require IV antibiotics! Who do I listen to?
Respiratory nurses EVERY time. Left to your GP you would be in serious trouble. The only way to deal with this and to keep it under control is to do what the respiratory nurses say.
I do not know where you live but I am under RUH Bath and they are brilliant. I can phone if I have any worries or questions and they will always get back to me and see me if required.
All of my (frequent) sputum samples are using their pots and paperwork even though I have to put them in to the GP surgery to be sent there. Most GP's are not up to date with this condition and many do not understand it.
You have to self manage to a large extent as you get used to the signs and symptoms of a flare up.
Your consultant will write to GP to request you have the correct antibiotic to keep at home for these times.
I have never seen my GP for this condition except to argue that I should have antibiotics at home and not have to beg for them in a flare up.
Please listen to the nurse experts and ditch your GP where this is concerned.
Thanks a lot, I did do that thank goodness I didn’t wait for antibiotics from GP I live in Harrogate North Yorkshire and have a good respiratory team, only need to leave a message and they will get back to me
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