Pseudomonas

Hi - I posted recently about having had a pseudomonas infection which I was treated with nebulised colomycin. Since stopping I’ve developed a cough again with sputum and had temperature spikes similar to before. I’ve done a sputum sample and it has come back saying that the sputum was thick with bacteria they would expect to see and I know my previous sample said the same before and said pseudomonas was present but that it doesn’t cause a problem for most people. I’m conscious about the lack of understanding with this bug and if my GP has just dismissed it as being normal (as impossible to see same GP for continuity of care) and want to make sure that I get the right treatment - has anybody else experienced this? Thanks

[Hidden]

Oh dear lottie, where do we start. I can see that you have asthma but not that you have been diagnosed with bronchiectasis, which your problems with pseudomonas and continuous sputum seems to indicate. I don't know if you are being treated by your GP or a general respiratory consultant, or both. Whichever it is they seem to be out of their depth with the treatment of pseudomonas which is varied and complex. Although many of us live with it colonising our lungs it can make us very poorly if the numbers grow out of hand.Only a bronchiectasis specialist really has training and experience in dealing with this.Once pseudomonas is in the lungs it continues to lurk, even if the numbers are too low to show up in the lab. The object is to keep the numbers low enough to be able to lead a normal life. This needs scrupulous lung clearance every day to deprive the bacteria of the warm wet environment that it likes to grow in. When the numbers multiply we get more, thicker mucus, it darkens in colour and we feel horrible. A spiking temperature certainly indicates that something is going on.

First base oral antibiotic treatment is ciproxen for 14 days. If this isn't effective after 7 days or can't be tolerated then IV for 14 days should be used to clear it. Nebulised drugs are then used on a long term basis to keep the numbers down. There is a misconception that nebulised colomycin will kill the bacteria in the lungs if used short term. It doesn't, it just helps to keep the numbers down on a long term basis. It is not surprising that the pseudomonas grows in large numbers if you stop nebulising colomycin.

If you have not been diagnosed as having bronchiectasis or had a ct scan, it would be a good idea to find a bronch specialist at a large teaching hospital near you, take the name to your GP and insist on a referral. You need to find out. The specialist will help your GP with your antibiotic treatment and also have access to hospital support for IV and their own physios to help you with lung clearance.

This must seem very daunting but I'm afraid that we have to be pro active in our own interests and vocifetous in sourcing the best treatment.

I hope that helped a bit.

[Alberta56 in reply to Hidden]

Well said Littlepom. It sound as if Lottie is being badly short changed.

[Hidden in reply to Hidden]

Thank you, that’s really helpful - I contacted my consultant and asthma team yesterday and basically asked if we need to restart the treatment, and what the plan is long term but I’m waiting for a reply. My consultant is a respiratory consultant with an interest in severe asthma - I had a CT scan but that was a number of years ago and a bronchoscopy, not been diagnosed with bronchiectasis as yet but have always struggled with thick sputum - I have saline nebs and NACYS to help clearing it, waiting for appointment to be shown lung clearance techniques. I know that sometimes we have to be the ones to keep pushing when we know we’re not been treated properly, is a bronch specialist different to a respiratory consultant? I don’t want to be seen as “the difficult one” but know that I’ve got to make sure I’m getting the right treatment

[Hidden in reply to Hidden]

First of all, insisting on the correct treatment from the appropriately trained professional is not being difficult. It is holding the medics to account for meeting your needs. Respiratory consultants are a bit like GPs in that they know something about a lot of lung conditions but very little about any one in particular. Most general respiratory consultants know most about copd due to a government training policy developed in the 1990s as part of a copd programme. I have been a patient for exams from 1st year med student to consultant applicants for many years and 98% of them only knew about copd. A respiratory registrar involved in my recent hospital stay confessed to me that he only had 2 days on bronch during his whole time at med school.Asthma specialists have gone on to have more training in asthma and develop experience and expertise. Unfortunately this means that their knowledge and interest in bronchiectasis is also severely limited.

Bronchiectasis specialists have had extra training and developed expertise in bronchiectasis which other consultants do not have. They are few and far between because bronchiectasis has long been one of the orphans of lung conditions, even though it is the same condition in the lungs as those with cystic fibrosis but originating from different causes.

Bronch is very difficult to treat. Every patient is different and it is complex in its nature.

Many GPs and general respiratory consultants are not interested in it because they do not know how or have the patience to treat it effectively.

It is a disgrace, given your long term symptoms that you have not been referred to a bronch specialist, who would perform a ct scan to confirm whether you have bronch and if you do, to embark on a proper programme of treatment and self management, rather than this ad hoc inadequate treatment that you have been given.

Asthma and bronch together presents more complex problems. My bronch specialist works closely with her asthma specialist colleagues in the treatment of such patients.

You need a proper diagnosis. You are entitled to treatment which allows you to live a better life. At present you are receiving neither. So regardless of what the people who are failing to meet your needs think of you, it is your health at risk and you will just have to get on the case. You can find a bronch specialist for yourself and it may be a good idea to phone their secretary and ask if they would take you on if your GP refers you. Then you go to your GP armed with the name. Hopefully, the fact that you have been incontact with the consultant's secretary will make it difficult for your GP to be awkward. Hopefully your GP may be like mine who welcomes the help that my bronchiectasis specialists have been giving him for many years.

[Hidden in reply to Hidden]

Sorry I’ve taken a few days to reply, but wanted to say thank you so much for your advice, it’s really appreciated. Just a quick update, still not had any response from the respiratory team at the hospital, but I was able to get a telephone consultation with my GP yesterday, who agreed to give me a two week course of ciprofloxacin to see if that helps me after I went through my history again - it’s impossible to see/speak to the same GP. I’ve left a message with my consultants secretary asking for a review due to being unwell and if there a plans for me to go back on the colomycin nebs. I’ve also asked if I can be referred to a bronch specialist as my consultant specialises in difficult asthma and sleep apnea - I’ve been under the respiratory team since 2015 following pneumonia, I’ve always been asthmatic and suffered with allergies, but following being unwell my asthma escalated and I was diagnosed with severe/brittle asthma and have been maxed out on meds since including home nebs and long term steroids.

My GP will do a referral for me, they really don’t know what to do and would definitely welcome the help that a bronch specialist would be able to offer, as I’m quite complex and was recently diagnosed with SLE Lupus.

Thank you again x

[Hidden in reply to Hidden]

Wow you certainly got busy! Well done you. I hope that the cipro knocks the pseudo on the head and that you can then go back on the nebbed cipro until you can have a consultation with a bronch specialist. Having difficult asthma does make you more complex to treat and I do hope that you can go to a bronch specialist who will collaborate with your asthma consultant. Thank goodness you have a GP who is sensible and honest about their limitations and hopefully will be able to refer you to the right specialist. Do let us know how you get on and good luck.

[Hidden in reply to Hidden]

Just thought I’d let you know how I’m getting on - finally had a call from the Respiratory team on Friday, the nurse said that she was emailing my consultant and that they’re having a meeting on Monday so she will also speak to him then to see what the plan is. She kept saying how for the majority of people pseudomonas don’t cause an issue and my last sputum sample was clear, couldn’t get her to understand that doesn’t necessarily mean it was or that my Rheumatology Consultant classes me as immunocompromised. She was also questioning why I was asking questions and not my GP, he’s writing as well, but I said because I don’t want to mess about and want to make sure I don’t get worse etc. I’ve started to improve again though, so something was definitely going on again. I was poorly with my chest from April last year through to July before they found the pseudomonas - I’d got high infection markers and inflammatory markers but they kept dismissing saying it was a combination of being on high dose steroids and my asthma. It was only picked up because my GP sent me to hospital, they sent me home saying I’d got a viral tonsillitis and he wasn’t happy as he could hear my chest and got me to do a sample, so for me I think I’d already had it for a while before it was treated with the right antibiotic. I had a two week course of cipro in July then had to wait two months to start the colomycin nebs. My referral for respiratory physio has been accepted so waiting for appointment and they also booked an appointment with my consultant but that’s not until middle of March and will be video rather than face to face x

[Hidden in reply to Hidden]

Two good things here - you sticking to your guns in the face of the nurse’s ignorance regarding the treatment of pseudomonas and a GP who is switched on and wanting to get you the best treatment. It’s good news that you have improved. Now it needs to be kept that way 1 by you with scrupulous emptying of your lungs every day 2 with proper ongoing antibiotic treatment. Probably nebulised antibiotic. Azithromycin three times per week is often prescribed to act as a prophylaxis for chest infections. It is good for keeping down inflammation and against some bacteria but not very effective against pseudomonas.

I hope that it is all onwards and upwards from now on.

[Hidden in reply to Hidden]

Thank you! I’m waiting to hear something now - already have azithromycin daily 250mg, I was put on that back in 2016 due to the number of chest infections as well azithromycin being used in difficult asthma for its anti inflammatory effect. I just hope that they don’t try and fob me off, but if they do I will ask for a referral. Hope you’re ok, and thank you so much for your help and advice, it’s really appreciated x

[Hidden in reply to Hidden]

👍x

[Mooka]

Littlepom is right as usual. When ciproflaxin stopped working for me I had a two week course of two iv antibiotics to kill it dead and have nebulised colomycin since. (Nearly four years). I have a respiratory consultant who specialises in my autoimmune disease but he referred me to a specialist Bronchiectasis consultant at my local hospital when I needed the Ivs. He has an excellent team of specialist nurses to help out with the ivs that I do at home. Good luck.

[Hidden in reply to Mooka]

I'm so pleased to learn that you are getting such excellent treatment.

[MoyB]

My sputum showed pseudomonas in September and October. The duty GP said they don't usually treat it unless it causes problems (wasn't that my reason for submitting the sputum samples and phoning on a weekly basis since June?). He said that as I had just started my winter antibiotics (Doxycycline) I should see how it goes'.

Unhappy with this response, I contacted the Resp team and finally got to see my consultant.

His response was very different. Ciprofloxasin prescribed without hesitation and I am to submit a follow up sputum sample two months from the date of ending the abs. His view was that if treatment is given before the pseudos have chance to take hold, the outcome is likely to be much better.

I do have asthma, but also COPD and bronchiectasis. My consultant's view and subsequent treatment matches the information given by the BLF.

I am now feeling considerably better. My peak flow has increased for the first time since the end of May when it dropped from 230 - 260 to 175-200. It is now back to 230 and improving every day.

As Littlepom has said, it's important to get advice from a pulmonary specialist. Pseudomonas in the general population does not seem to be a problem but it can cause big problems for those of us with lung conditions. My GP was not totally wrong, but I don't think he took my bronchiectasis into account.

Hope you soon get the support you need.

Xx Moy

[kcmo456]

You have very good advice here, Lottie. The only thing I might add is that with each lung infection, your lungs experience some scarring and over time, that part of your lung will not work as well or work at all. So it is important to get treatment by someone who knows about bronchiectasis and will help you to understand how to take care of your lungs. You’ll learn to be your best self advocate as many in the health field are not familiar with Bronchiectasis. Good luck!

[Jaffa_Cat]

I've never commented on here before, but could relate your post and just wanted to say I'm sorry you're not being taken seriously. It's so frustrating when we're basically left to get worse before anyone will help us.

I have asthma, which has gone downhill significantly since the summer. I feel constantly short of breath, have been coughing (was coughing up sputum until I took a long course of steroids, which seemed to reduce what I was coughing up. But have now stopped steroids and it seems to be getting worse again). Have also been getting persistent low-grade temperatures for the last couple of months, stiff/painful/hot/swollen joints, bright red 'rash' on my cheeks that comes and goes, weight loss and generally just feel really unwell.

I did a sputum sample at the end of last year, which showed Stenotrophomonas Maltophilia in my lungs. One respiratory consultant at my local hospital said it needed to be treated, but then another over-rode that and said it was probably just because I'd had a lot of antibiotics in recent months and it didn't need treating. I went to A&E in December as well, and my D-Dimmer was elevated, but they said it was probably just due to inflammation.

So I've just been left to deal with these symptoms, using a lot of inhaler puffs to try and reduce the breathlessness a little. I am having a day assessment at The Royal Brompton on Tuesday, so I'm really hoping that the tests will give some answers and bring about some treatment, as I just want to know what's going on. I've heard good things about The Brompton, so it might be worth asking for a referral to them. I really hope you're able to get some proper answers soon and get the treatment you deserve x

[Jaffa_Cat in reply to Jaffa_Cat]

Sorry just realised I recommended The Brompton without knowing if you're in the UK! If you're not, it's worth looking for a specialist wherever you are, who understands these sorts of things like others have said x

[Sohara]

You need to see a Respiratory consultant , & do a sputum sample. You may be colonised with pseudo . DO NOT let this be wiped away get it sorted & get expert help

[Hidden in reply to Sohara]

Thank you, after my last appointment with my Respiratory Consultant I’m back on the Colomycin nebs and also been given an Aerobika to help with chest clearance and see a chest physio every 4-6 weeks.