Good morning all.
With newly diagnosed bronchiectasis and now a second positive pseudomonas test, after a course of Ciprofloxacin, I am waiting to speak to my consultant to see what we do next.
I am interested to know of others' experience of pseudomonas treatment. I am feeling rather frightened and panicky as I know it can be very persistent.
Hi, I’ve bronchiectasis and pseudomonas is one of the bugs I sometimes grow, I suspect it’s always lurking there somewhere. I’ve always managed to clear it with Ciprofloxacin but have been told if not I may have needed a course of IV antibiotics which in my situation would be done at home, with nurses coming to the house. Hope this helps and you’re feeling better soon xx
Hello PernodGirl and welcome. I have been living with pseudomonas since 1986 and it’s nothing to get in a flap about. You have been given the only effective oral antibiotic against it and if your consultant knows what they are doing it will have been a two week course. Once pseudomonas is in there it lurks and the object is to keep the numbers low enough so that we can have a happy productive life. Sometimes people claim that it has ‘gone away’ after treatment but actually, lab tests are notoriously inaccurate and small amounts just don’t show up. So we deal with it. If cipro becomes difficult to take we can have a course of IV antibiotics and many bronchs nebulise antibiotics on a long term basis to keep the numbers down. I have nebulised antibiotics on and off since the early 1980s ( lifelong bronch, diagnosed in 1953) I have been lucky enough only to have needed IV three times. We are all different. It is also vital that you are in control of your bronch and have a strong regime of emptying the mucus from your lungs every day because this removes the warm fluid in which the bacteria love to breed.
Do check that your consultant is a bronchiectasis specialist and not just a general respiratory consultant. Only bronch specialists have the extra training and see enough bronchs to get sufficient experience in a very complex condition. Bronch specialists are usually at big teaching hospitals. They have their own teams of specially trained physios to teach you how to empty your lungs and instruct the GP ( who generally know nothing of bronch) which course of treatment to take.
If your consultant is not a bronch expert, look for someone close to you, take the name to your GP and insist on a referral. This really is so important for your future care.
Good luck. Don’t worry. We are here to support you and feel free to ask any questions.
Hi Littlepom and thank you for your reassuring reply. I think, after a long discussion with my consultant yesterday, I'm going to go down the nebuliser route for now. I've been offered IV abx rather than another course of Cipro, but as it would mean at least 48hrs as an inpatient I'd rather avoid that during the current situation. I've taken your advice and asked to see a bronch specialist. Luckily there is one who has just started at my local hospital, but she's unfortunately being completely diverted by Covid patients at the moment. For now I'm very happy with my care. I've seen a respiratory physio and am well in to the twice a day postural drainage regime.
It's very good to know there are people to discuss things with on here, so thanks again.
Wow that’s great to hear. I hope that you feel more confident in your treatment now. It seems that the doctor whom you saw is quite savvy with bronch treatment, probably because they work with a specialist and hopefully you will be able to come under the care of the specialist when this covid releases her back to you.The nebulising and mucus emptying just becomes part of your daily routine. Like brushing your teeth or my grandaugter’s management of her type one diabetes. You will still have the option of taking cipro with the nebulising if you have an exacerbation and feel poorly and then IV if you feel really rotten and the cipro hasn’t had an effect.. I have refused IV unless I felt terrible and a week of cipro made no difference. I now have the option of doing my own at home but for me, I would rather avoid it as much as possible. It is how I feel rather than what always shows on the lab plates that is important to me.
It may be a good idea to get the doctor you saw to prescribe isotonic saline and ventolin to nebulise before the antibiotic. The ventolin opens the airways to allow the drug best access to your lungs and the saline soothes the tissue which can help prevent irritation and coughing ( they call it spasm) from the drug.
We are all different and you will find the best way forward for you.
Onwards and upwards. Do stay well and remember - enjoy life.
Hi PernodGirl, Firstly, I want to say I couldn't give you any better advice than Littlepom who has already replied to you.When I was diagnosed with bronchiectasis about 7 or 8 years ago they found pseudamonas in my lungs and I was put on long term colomycin which I nebulized twice a day. I was referred to a physiotherapist who showed me how to clear my lungs of mucous. I was also given a little gadget to help do this, an acapella. There other similar ones available for example, a flutter.
It is vital you clear your lungs daily to stop the bacteria growing. As bronchiectasis cant be cured it has to be managed and the pseudos.have to be suppressed.
The only other thing I would suggest is to ask to attend A Pulmonary Rehabilitation Programme. I attended one last year and hope I can do another as I found it so helpful. It was a 6 to 8 week course which was specifically for bronchiectasis sufferers. You attend twice a week and each 2 hour session is split into two parts. The first part involves appropriate exercises and the other part is educational. Do ask your consultant about attending one.
Don't worry, you will soon learn how to manage your condition and realise you can enjoy a fulfilling life.
Cheers.
Thank you RoadRunner44 for your reply and for sharing your experience. I will certainly look into a Rehab programme once that sort of thing is up and running again.It is very scary to suddenly have a 'condition' to manage but good to know there are supportive people to discuss it with on here.
Thanks again
Hi. My husband be having problems with pseudomonas since February. He does have serve emphysema . But at last 3 weeks ago he finally got 2 week ciprofloxacin from the respiratory team he under. I am just a bit worried because he now finished the course and we are waiting for the results of his last sputum test . But some days it seams as if it cleared up and other like it back as bad as before. Thanks Littlepom for your advice will show my husband as he worried
Hi alyvonne. Of course I have bronchiectasis and am not experienced in the problems of living with emphysema. As far as pseudomonas goes and from reading the posts of others, they seem to be similar to bronch. It isn’t necessarily pseudomonas showing on a plate that is important. Mine constantly show positive but I won’t have treatment for it unless I feel that it is getting out of hand which is usually after being infected with somebody else’s virus.It is very much how the patient feels which defines how it is being controlled. Do urge him to get as much mucus out of his lungs as he can so that it can’t breed.
Thank you x
Hello and welcome to the site PernodGirl, so glad to hear you are getting good treatment and care x
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