Bronchiecstatis

Hi everyone, got a chest infection a while back, doctor prescribed Amoxycillin then after a week Co-trimoxazole, and then when it still did not clear up Clarithromycin with steroids. Felt fine but a few days after finishing the dose started coughing badly again and a sputum test showed bacteria (I think it was stenotrophonomas but not sure as only had really quick look at computer screen). The recommended antibiotic is Co-trimoxazole so I am back on that plus had a chest x-ray yesterday morning. I am a bit concerned about why the Co-trimoxazole did not work first time and also I am meant to be going on holiday abroad on Saturday (antibiotics run out Friday). Want to go on holiday so much but feel a bit vulnerable. If anyone has advice it would be very welcome, thanks :)

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  • I really hope you are ok for Saturday, just spend the week relaxing and getting as much rest as possible. 😉Xxx Bernadette

  • Thank you xx

  • Hello, as a Bronchiectasis sufferer myself, I'd like to point you towards this website chss.org.uk/chest-informati...

    Most of us find that we need at least 2 weeks of any anti biotic treatment. As there are lots of us on here, I'm sure others will soon come along and give advice'suggestions.

    I've just read up about stenotrophonomas, and found it has been renamed pseudomonas. This colonises the lungs, and is very difficult to treat. I usually end up in hospital for 2 weeks on intravenous anti biotics. But I have been trained to treat myself, but it involves at least 3 days in hospital whilst you are trained. Although the last time I had to stay in for 15 days as I had Pneumonia as well and spent 8 days on Oxygen. xx

  • Thanks for the information - just a little bit scary though! Wishing you well xx

  • I think I would be tempted to see gp and arrange additional prescriptions/antibiotics so that you can continue to take if still not well.

    Far easier than deciding on Sunday you still not well and trying to find a local doctor!

  • Good advice - thanks :)

  • Hi Fionafish. I have been colonised with pseudomonas ( if that is what stenotrophonomas is a very old fashioned word for) since 1986. Amoxicillin is inneffective against it when it causes an exacerbation. Also the other two antibiotics are not usually prescribed for it and I have never had them. The most effective front line treatment is ciproxin 750mg twice daily for at least two weeks. Get your doc to give you this to go away with. You will need to stay out of the sun whilst taking them.

  • Will you be my GP, please? Where I go they think sputum tests are a black art that, in 5 years I've NEVER had one!

    They are very good at saying "Let's try [some other basic & cheap] antibiotic".

    As for staying out of the sun [taking Methotrexate], the GP never thought to mention it - the hospital told me 8 months AFTER I started taking it!

  • lung conditions and the drugs used are very complex. What annoys me is that many GPs are woefully ignorant about them but rather than admit that and seek help for their patient from the right specialist they pretend that they know what they are doing. This results in mis prescribing of drugs, often the wrong drug in too low a dose for too short a period. This in turn results in a waste of NHS money and poorly, confused and often frightened patients who should be able to look to their GP for guidance. I suppose that is why we have sites like this. Those of us who have been battling with medics and educating ourselves can hopefully inform and support others so that they can source the best treatment for themselves.

  • This gives me hope but how have you lived all these years with the bacteria? Will also mention ciproxin to the doctors - thanks for your reply.

  • I have just looked up stenotrophonomas. It does not say that it is another word for pseudomonas but an organism itself. Usually aquired by immuno suppressed patients in hospital environment or whilst having IV. The treatment prescribed is Co-trimoxazole which you have had. If your GP is sure that this is what you have you probably need a higher dose for longer because it is difficult to treat. I hope that you get something sorted out so that you can enjoy your holiday.

  • Thanks littlepom, this is very useful, best wishes :)

  • now that you are armed with some information I think that it would be a good idea to go back to your GP and insist on knowing exactly which organism is giving you the problem

  • I could have been looking at old info about steno whatsit which may actually be pseudomonas so a visit to pin down the GP is essential. Also, when you get back from your holiday insist on a referral to a specialist in bronchiectasis - not a general chest consultant, because your your whole treatment regime will need updating and your GP advised how to treat you. very best wishes.

  • Got the letter last week for an appointment in December - ho hum - thanks for your best wishes :)

  • en.wikipedia.org/wiki/Steno...

    "Stenotrophomonas maltophilia is an aerobic, nonfermentative, Gram-negative bacterium. It is an uncommon bacterium and human infection is difficult to treat.[1] Initially classified as Bacterium bookeri,[2] then renamed PSEUDOMOAS maltophilia, S. maltophilia was also grouped in the genus Xanthomonas before eventually becoming the type species of the genus Stenotrophomonas in 1993.[3][4]

    S. maltophilia is slightly smaller (0.7–1.8 × 0.4–0.7 μm) than other members of the genus. They are motile due to polar flagella, and grow well on MacConkey agar producing pigmented colonies. S. maltophilia is catalase-positive, oxidase-negative (which distinguishes it from most other members of the genus) and has a positive reaction for extracellular DNase.[citation needed]

    S. maltophilia is ubiquitous in aqueous environments, soil, and plants; it has also been used in biotechnology applications.[5] In immunocompromised patients, S. maltophilia can lead to nosocomial infections."

  • Thanks for the info - I work in education not health so could I have got it gardening? Have stayed away from spas etc since hearing of pseudomoas.

  • Hi Fiona, for starters, if you have Bronchiectasis, taking a course of antibiotics and steroids with you when you go on holiday, is always a good idea. That way you can start your meds immediately if you start to breed an infection.

    In your present situation, the wisest thing to do is go back to your doctor and either get more of the antibiotic you're taking or a different one if there's one more appropriate to the specific bug you have. Better get started on the abx ASAP and hopefully you'll feel we'll enough to get away next week.

    If it's any comfort to you, for the last few years, almost every trip I've gone on has happened while I'm taking antibiotics for an infection. If I feel well enough to go then I just pack up all my meds and go away as planned. So far, touch wood, it's worked out okay for me and once I have my meds with me, I'm as well ( or not) as I am at home. And a holiday/ trip always helps me by building up my mental energy and the feeling of accomplishment. Life is too short to miss out on things, if there's any way you're well enough to get up and go.

    Good luck and Bon voyage :)

  • absolutely Billiejean.

  • Hello... I always have a 10 day course of antibiotics. When I have had a chest infection that won't go away co-amoxiclav generally does the trick. You should also have rescue packs of antibiotics at home, take some with you. Have a lovely holiday.

  • Thank you :)

  • Can you take a supply of antibiotics with you? I was told that Bronchiectasis always requires two weeks of an antibiotic and if you have a psuedonomas infection maybe three weeks of the specialist antibiotic to which it is sensitive make sure you keep giving in sputum samples for testing to be given correct antibiotic . I once had pseudonomas and it took three weeks to clear - I also have Bronchiectasis - Good luck

  • Thanks for the information and it is reassuring to hear you have been in the same place. I am going to try and get doctor to give me at least another week of the Co-trimoxazole, cheers :)

  • Three year bronchiectasis sufferer here. BronchX is a chronic disease, but it will not necessarily rule or ruin your life if it is properly treated and if you learn about it so that you can maintain your own health in addition to getting the right directional guidance and monitoring from specialists who work daily with the disease.

    Step 1 is to get reference to a pulmonologist with experience of working with BronchX patients. Be polite and friendly with your GP but be firm in your objective to get such advice. As a last resort ask about complaint processes within your GPs practice or look online for the NHS complaint procedure. Alternatively, if you have any savings consider whether they are better spent on paying for some initial analysis and advice from a specialist - it'll cost a few hundred pounds a year and not thousands (although a CT scan might run up into the thousand plus category). One hears apocryphal stories (and it applied to my parents) of older people struggling along with health conditions while keeping money in the bank so they can leave it to their kids. DON'T, your kids won't thank you for your misplaced priorities.

    You can expect an experienced pulmonologist to do appropriate scans (if you are paying then let them know if you have budgetary constraints if they think a CT is required - they may be able to flip you back into NHS for that), an extensive set of blood tests including an all-important assessment of the state of your immune system and breathing tests (with and/or without fast walking versions) to establish your baseline FEV's for assessment and future monitoring.

    You should expect then a full assessment of your condition, an antibiotic treatment plan - recommending the most appropriate 'immediate rescue' anti-bi to have on-hand for when an exacerbation (Infection) comes on - to be taken as soon as you have given a sputum sample, advice on excercise regimes and self-administered physio and sputum clearance techniques. They might even recommend prophylactic anti-bi regimens if you suffer from overly-frequent exacerbations.

    Regular reading of postings by other BronchX sufferers will also give you confidence that you can manage this disease. I highly recommend the bronchiectasis group in the 'Patient' website forums (https://patient.info/forums) which has a large number of sufferers from the UK and other English-speaking countries sharing their advice and experience without the need to trawl through other postings on other lung diseases.

    Hope this helps in the long run! Good luck

  • That is really helpful, thank you. Was thinking of paying as I have been given a date of December to see the consultant, which is very far off. Will also look at the forum. Best wishes :)

  • I've had this so I think I can clear up the confusion over what it's called. Yes it was at one time renamed pseudomonas maltophilia but that's not the pseudomonas many of us are colonised with & refer to as "pseudo" (that's pseudomonas aeruginosa, a totally different thing.) Anyway for many years now it's been reclassified as stenotrophomonas maltophilia (s.maltophilia for short), nothing to do with pseudo.

    Its main sensitivity is to Septrin (co-trimoxazole) so it's very difficult to treat in those like me who are allergic to Septrin. Luckily, IV Timentin worked for me. It's really lucky you can take Septrin, many people can't because of the sulfonamide in it. Otherwise you'd have had to have IVs too! As others have suggested, ask your GP for an extended course - if you didn't have at least 2 weeks first time round, that's probably why it didn't work. You need to keep it at bay whilst you're on holiday at least.

  • Thanks for your reply, very helpful. Doctor unsure whether co-trimoxazole will work and said on Friday if my oxygen levels were not so good she would send me straight to hospital. Have got nine more days on the ABs so cross fingers - happy days. Good luck to you.

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