Pseudomonas

[Udagga]

After 2 weeks of IV ceftazadime my sputum still showed pseudomonas and seems to show resistance to a lot of the usual antibiotics. Most of what I cough up is pretty white at the moment surprisingly and I don’t feel particularly unwell. Pretty disappointing though. Put a call through to my bronch consultant via the respiratory nurse. So difficult to get rid of this thing and I never understand the term colonised and how that is any different to being infected?

[Hidden]

Once pseudomonas is in there, it is in there (colonised). The object is to keep the numbers low enough so that you feel well and csn lead a normal life. If I had white sputum and felt well as you say you do I wd be delighted.

[Udagga in reply to Hidden]

Thanks. I get anxious.

[Hidden in reply to Udagga]

That's very understandable. I have lived with pseudo since 1986 and have only had IV twice for it. For me less is more, works.

[GintyFerguson in reply to Hidden]

Really? I wonder if that's true. I had it 7 years ago, hit it hard very quickly with two weeks of ciprofloxacin and so far never seen it again.....touch wood.

[Hidden in reply to GintyFerguson]

It hides. It's great if the cipro worked to get the numbers down so low that lab tests don't detect it. . I have been taking it since 1986 when I need it along with nebbed abs on and off. We are taliking about the difference between the science and how we experience it in our bodies. Lab tests are so innacurate, especially in bronch for some reason.According to the labs cipro isn't suppised to work in me any more but in my body it does. We are all different and it is complex. The most important thing is how you feel.

[GintyFerguson in reply to Hidden]

Do u have some evidence of this? Being colonised is a different matter I believe. I believe if its caught fast and treated hard it doesn't remain hidden.

[Hidden in reply to GintyFerguson]

Eradication is actually possible if it’s picked up very quickly after being infected, hit very hard and you have a bit of luck on your side. The Torpedo study was used within cf a few years back to see what the best option was to attempt eradication following a first positive culture. I’m not sure what the outcome was as small person already had a chronic infection (what some people refer to as colonised, although colonisation with bacteria is actually something different), but if I recall correctly, they looked at 3 months of cipro versus 3 weeks cipro with 3 months of nebs versus 2 weeks of IVs with 3 months of nebs. There may have been some other treatment regimes, but these were the common first responses at the time. Whilst I don’t know if the criteria is different in other conditions, you can only be officially, clinically classed as having a chronic pseudo infection with cf if you have 4 positive cultures over a year. In spite of that, the docs do sometimes assume chronic infection if you don’t meet that criteria but are still occasionally culturing pseudo once every twelve months or whatever and the profiles are the same, as that would obviously suggest that eradication has failed. Interestingly, research has now found that where we believed managing pseudo (and other chronic infections) involved getting the numbers down and keeping them down, treatment does very little to the bacterial load.

[Hidden in reply to Hidden]

Unfortunately Charlie you also have to be cf sufferer to get such treatment.

It is difficult to explain to people on here that we are all different, receive different levels of care and live with our conditions in the best way that we can.

I hope that things are improving for you and your little one.

[Hidden in reply to Hidden]

I read your reply and was once more left feeling a bit naff about my efforts to help, but something was itching at the back of my mind. I went and double checked, and it turns out my brain was itching because the guidelines for eradication of pseudo in non cf bronch are actually on a par for a first isolate. When you first made me aware that cf patients get what amounts to preferential treatment, I was so disappointed in both my own ignorance and assumptions, along with the disparity of the situation, that I immediately went and read the entire BTS guidelines so that I wouldn’t make the same mistake again and inadvertently provide false or misleading information, and I do now try and qualify all my responses on here as a result of the differences in treatment, as I did in my above comment about the Torpedo trial. The exact regimen may possibly vary depending on local protocol, but as far back as 2007, UK hospitals were routinely giving full, 3 month eradication protocols to patients with non-cf bronch isolating pseudo for the first time, and the current BTS guidelines state:

Offer patients with bronchiectasis associated with clinical deterioration and a new growth of P. aeruginosa (1st isola- tion or regrowth in the context of intermittently positive cultures) eradication antibiotic treatment: (first line treat- ment: ciprofloxacin 500–750 mg bd for 2 weeks; second line treatment: iv anti-pseudomonal beta-lactam ±aniv amino- glycoside for 2 weeks, followed by a 3 month course of nebu- lised colistin, gentamicin or tobramycin). (D)

So, if a NCFB patient cultures pseudo for the first time, or after a long spell of being free (also in the guidelines) they should absolutely feel free to ask for an eradication attempt if not automatically offered one by their team, and they’ll be getting exactly the same treatment as a cf patient with a first isolate. I know it’s slow progress and there’s still vast room for improvement, but at least that’s moved in the right direction.

Turns out small person is now growing an NTM so we’re waiting to see how that develops, but otherwise her lung function is good at the moment and she’s gained some weight back. Thank you for asking.

[Hidden in reply to Hidden]

Thank you Charlie for doing all of that reading and for your concern. Don't feel that you may be giving misinformation. You do your homework and all help is useful to those who need it. My consultant was the co author of those guidelines and I have had all of those treatments but pseudo just loves its cosy home in my lungs. It rarely majes its presence felt though.

Remember I have been on this roundabout since 1953 and as far as pseudo goes, since 1986. When I first had cipro 750mg bd 14 days it was like magic. But then the pseudo comes back and takes up residence. I just live with it, nebulise ceftazidime on ans iff and 0.09% saline. I take cipro a couple of times each year. The best thing is that it seems to keep away the other bugs, especially haemophyllus which used to make me really poorly. I have had IV twice in my life for it. The second time due to community aquired pneumonia. That is incredibly few times for someone colonised with pseudo and my team don't really know how I keep avoiding having IV. As you know so well with your special one. It is so individual to all of us and the word is 'guideline'. There is no definitive answer to what we have to live with or the ways that the bugs take their opportunities.

It's good to hear that she is putting on weight and do hope that the NTM may just be one of those things, like various flora which may just sit there and not cause too much trouble. I hope that you both have a lovely Christmas. xx

[GintyFerguson in reply to Hidden]

Actually it's about 8 years since I had pseudo. I felt ill and got sputum sample in fast. Took rescue abs but didnt feel great, I still went to work. As soon as the results were in my GP (of 25 years) phoned me to say he wanted me to leave work and pick up a prescription from chemist and start a high dose of ciprofloxacin immediately for two weeks. He quoted research that said if it is hit hard and quickly it's possible to get rid. I left work and got said pills. Since then I have had the usual moraxella, haemophilus and had doxycycline and clarithromycin to good effect. Pseudo has not come back ...yet...although I hear folk saying " ah , yes but its hiding". Whatever , I've clearly blocked its escape for now!!

[Hidden in reply to GintyFerguson]

If you haven’t cultured it again in 8 years, and aren’t taking anti-pseudomonal nebs or routinely using cipro as a secondary antibiotic, then from my own understanding and experience I would say the chances of it still being present are absolutely, unbelievably minuscule. Even on full treatment, regular IVs using Tobi, and with cipro as her rescue option, small person still used to culture it every 12 or 18 months on average, and most people with it long term will get occasional positives or stubborn exacerbations that only respond to cipro and therefore suggest the lurking pseudo is the root problem. Eradicating requires a certain amount of luck to catch it asap, and probably some more luck even then, particularly when the definition of eradication for pseudo in all respiratory conditions is actually taken as being pseudo free for at least 6 months after treatment, which really isn’t that long, but it is considered entirely medically possible to get rid of it if hit hard. I actually had a little google just to make absolutely sure that I wasn’t talking out of my bum - which does happen from time to time! - and a retrospective study between 2007 and 2014 purely of non cf Bronchiectasis patients in Northern Ireland actually found that 52% of cases were still pseudo free a year after treatment for a first isolate when given cipro and colomycin nebs for 3 months.

Anyway, here’s hoping you remain free of the little blighters for many years to come!

[GintyFerguson in reply to Hidden]

Thanks....hopefully I did catch it. I am non CF bronch. I know exactly how I caught it too. Some flowers were allowed to go mouldy in a vase and as I removed them a cloud of mould puffed up and I was breathing in at the same time. Soon after that I felt very ill! This of course us why flowers are no longer allowed in hospitals . Hope your wee one can combat the evil one!

[Hidden in reply to Hidden]

There is another little point. Not all labs have the specialist to isolate pseudomonas when it is in small numbers. This varies so much across the country. In the 80s and 90s qe gad a fab research lab and tech at the General in Bham and bugs were isolated there that never showed up in the normal hospital labs. When tge new QE opened the bronchs were not alliqed to have their samples tested alongside research samples for fear of contamination. So ours had to go to the general lab and immediately some peopke's pseudo had miraculously gone. The cfs had their own lab. It is very frustrating.

[Hidden in reply to GintyFerguson]

I don't know what evidence you are demanding of me. 64 yrs of lab tests coming back negative to a host of bacteria including pseudo when clinically they were obviously giving me trouble, likewise bugs supposedly resistant when treatment reduced them to invisibility. Speaks for itself. We bronchs live with the bacteria chase.

Whichever they are they will keep coming back to have parties in the fluid in our lungs. For myself I do not believe that endless abs and IV treatment in a bid to eradicate the bugs totally in a lab plate is a good thing. They take toi much of a toll on my body. Some people are so poorly that they have no choice but to resort to this. If you feel well and there is no sign of pseudo in lab tests that is great. You will know by how you feel if things change.

[cofdrop-UK]

Hi Udagga

I would assume if you were offered IVs then your pseudo showed up as a heavy growth, possibly +++. White sputum and feeling well is a good sign (I have never coughed up white sputum in the whole of my life).

The first time pseudomonas shows up in sputum, it seems respiratory consutants are a bit divided re trying to eradicate it and wait and see, or treating it as colonised and using nebulised antibiotics etc.

When you say the pseudo is resistant to a lot of abs, I wonder if you are talking about the more commonly used broad spectrum abs eg Amoxil. Many of these abs are very useful for gram positive bacteria eg strep p but pseudo is a gram negative bacteria and depending on the strain you have, there should be more abs which it is sensitive to.

An infection is when you have an exacerbation and feel unwell with,usually darker more puralent sputum, breathlessness etc. Colonisation is when you have a bacterial which is resident in your lungs, usually at a low enough level not to make you feel ill. With a lot of management from clinicians and yourself (lung clearance). They can increase in number sometimes and have a party and that’s when you have an infection.

Love cx

[Hidden in reply to cofdrop-UK]

Lovely reply C. I was hoping you would come along as I am worn out from staying awake most of last night.

[cofdrop-UK in reply to Hidden]

Tell me about it. Stayed up and watched it for a while, then listened on the radio. Gave up in the end once a few results came in and it appeared the exit polls were correct 😢

cx

[Udagga in reply to cofdrop-UK]

Thanks for the reply cofdrop. White sputum is not what I normally cough up and that is better since 2 weeks ceftazadime. I caught a cold virus in the middle of it. Bad timing! I thought I was going downhill a week or so later so off to the gp with sputum. Why have those pots got smaller!!!!!!!! The IV was suggested for a good clean up after unsuccessful trials of nebuliser abs (colomicin, tobramycin and gentamicin).

Anyway came back resistant to a lot of the big guns like cipro, gentamicin and ceftazadime etc. Anyway been in touch with my team who are great and I’ll see what they say. I’m aware that resistance seems to come and go. Some samples have been cipro resistant before then next time not.

Generally okay with the usual tiredness later in the day. I guess one of the questions I have which never seems to be answered, does this kill people and is this going to kill me? I do all the right things like lung clearance and glad that I still work.

Appreciate yours and littlepom responses.

[cofdrop-UK in reply to Udagga]

I so empathise with you Udagga. It is incredably difficult for those of us who cannot tolerate nebulised colo, tobra and gent. I was fine at assessment but the breathlessness and spasm came on more gradually and put me in hospital. I do however have asthma also. I cannot tolerate Cipro either, so a bit snookered from a prophylactic and oral ab point of view when it comes to treatment.

You are so right that a bug can be resistant on one occasion and not another. I had IV Mero a few times and on the last occasion the strain was resistant in the lab, but the con and I decided it had actually done something in the lung as my sputum was improved. This time it was sensitive but we decided to try Aztreonam.

It is incredibly frustrating when you become unwell after doing all the right things within this high maintenance regime to try and keep the status quo. These ittle b****** are opportunistic.

Not sure your question can be answered, not by me in any event. I just prefer not to tie myself in knots worrying about what ifs.

Take care my friend and I hope your lungs keep behave.

Love cx

[Hidden in reply to Udagga]

If you google pseudomonas infection, you’ll find lots of information on how this is a really terrible bacteria and associated mortality rates, but almost none of it is relevant to those growing it as a result of respiratory disease. In systemic, highly acute infections the outcomes are pretty poor, but that’s because the patients in this category are usually immunocompromised or already very unwell in hospital: otherwise healthy people cannot catch this bacteria. In respiratory patients, it’s almost a topical infection rather than a systemic one, and whilst statistically people growing pseudo are deemed to have ‘worse’ outcomes in the longer term, that’s partly due to the bug being the most clinically prevalent across all lung diseases rather than because it’s directly killing people. In practice, there are thousands of people living with chronic infection, some of whom have been living with it for 20 or 30 years and not knocking at the pearly gates any time soon.

Resistance in pseudo is rapidly on the increase - my small person has 2 different profiles, one sensitive to cipro and mero, one resistant to both. In her case, the cipro resistant one genuinely is cipro resistant because if you give it when she’s growing it it does absolutely nothing, but as dear Cof mentions in her reply, in vitro testing in the lab for sensitivities doesn’t necessarily correlate to actual effectiveness inside the lung, so whilst profiles are good for guiding treatment, they’re not absolute or written in stone and a patient may actually respond to a drug where the lab says they won’t. She also mentioned Azlea (Aztreonam), and for a couple of years this was almost a wonder drug for us against the pseudo, so might be worth mentioning to the docs for consideration if you’re struggling to find something effective - it’s available IV and nebulised.

[cofdrop-UK in reply to Hidden]

A very informative post Charlie, as always.

Just a note though on Aztreonam. Whist it is available nebulised for the cf community, it is not avaiable for non cf bronchiectasis. They are doing a trial for nebbed Aztreonam at present and one of our dear friends on here is hoping to take part in this trial. I did ask at my end of IV consultation if our centre was taking part, as I thought since I was intolerant to other nebbed abs I woud have nothing to lose by taking part. They are not taking part and con did say that I may not meet the criteria as I also have asthma.

I am hoping things are going better for little person and for you too.

Cx

[Neville33 in reply to cofdrop-UK]

In Canada and the states Cayston is nebulized for pseudo...in Canada for now, we have to buy it..

[Udagga]

Thank you all for these posts which I’ve found interesting and informative. I try and stay away from the internet on this stuff as it’s not helpful for me but I succumb from time to time. I seem to keep growing this bug and some advice from health professionals has been unhelpful and I’ve probably used abs more than necessary. My current respiratory team and bronch specialist have made it all more manageable. Much gratitude. It’s useful to hear from people and about people live with this for decades. My immune system is pretty good and my experience is that lung clearance exercises is the thing I need to do come what may. I’m very lucky to live near a new big city hospital with a very good brochiectasis team.

[cofdrop-UK in reply to Udagga]

Just a thought - here is a link from the European Respiratory Society. This Patient Priorities - Bronchiectasis is something I had the good fortune to be involved in as one of the patient group. At the bottom of the Bronchiectasis you will find discussions between clinicians with expertise in BE, which you may find interesting, as the treatment of pseudo is discussed.

europeanlunginfo.org/bronch...

Cx

[Hidden]

I have Bronch and am colonised with Pseudo, which has been asleep for a number of years. Can't cough sputum of any colour at the moment. My DIL also has Bronch but thankfully no Pseudo.

[Neville33]

Did u get a sputum after the IV....if your sputum is clear then you knocked it back to minimal...have they tried the nebulized drugs first like Colistin, cayston and tobramyacine...I on have psedomonas and am onColustin every other month for life