antbiotics question with Bronchiectasis

[SalvadorBA]

Hello again, I had a flare-up 2 weeks ago after getting a flu bug about a month ago. I asked the doctor for antibiotics and was given (over the phone) a course of one week which finished a week ago (clariphromycin 500 grams, 14 tablets), which worked initially ut now again I'm having problems breathing and a lot of heartburn in last few days. i have read some posts on this site that antibiotics should be given for 2 weeks. Can some advise if I should now ask for more antibiotics for one or 2 weeks please as I fear my doctor won't know. Thanks for any quick advice please.

[Oshgosh]

Perhaps you could ring your GP and ask.

[Patk1]

Bronchiectasis should be treated with 2wks a/b

[Hidden]

With bronchiectasis, antibiotic courses should always be a minimum of two weeks, and a sputum culture should be done to a) identify the bacteria causing the problem, and b) make sure it’s the right antibiotic to do the job. Managing bronchiectasis is not the same as managing COPD, and a GP won’t know what they don’t know, so will probably try to do exactly that. Your care needs to be managed by a respiratory consultant with expertise in non-cf bronchiectasis.

With the caveat that I’m not medically qualified, having had a break for a week, my understanding is that you need a two week course now: any benefit from the first week will have been undone by the break. It’s also my understanding that clarithromycin isn’t a particularly favoured antibiotic in bronchiectasis, unless the bug your growing is particularly sensitive to it. Some of the other bronch patients here can probably advise better on that (or correct me if I’m wrong!), but antibiotic choice should be guided by what you’re growing, or known to grow.

[SalvadorBA in reply to Hidden]

Thanks Charlie _G! That's very interesting - I'll print out your answer and discuss it with my doctor when I see her tomorrow. I was surprised to just find a report in the NICE website which say AB for Bronchiectasis should be 1 week, so I wonder if my doctor looked before prescribing (page 5 of google.com/url?sa=t&source=.... Everyone on this forum seems to agree on the 14 days, as also recommended by the European Lung Foundation Factsheet on bronchiectasis. Again many thanks for your taking the time to write earlier!

[Hidden in reply to SalvadorBA]

The current NICE guideline online states 7 to 14 days with the decision based on disease severity and previous patient response, but the British Thoracic Society guidelines state 14 days regardless, and they’re the guidelines that have been written in line with the ELF recommendations. If you haven’t already, you may want to familiarise yourself with the BTS guidelines, as they document current best practice for diagnosing and managing ncfb in the UK. They’re very comprehensive as they’re primarily aimed at medics, but accessible to patients:

brit-thoracic.org.uk/docume...

Both the NICE advice and the BTS guidelines agree that a sputum sample should always be sent and antibiotics tailored based on what’s being grown. In practice, this may mean starting on one antibiotic and then switching if necessary once the culture results come back, but it is important. In bronchiectasis, some of the bacteria that cause problems and need treating are not typical, and may have high levels of antibiotic resistance, meaning the choice of antibiotic given is crucial to effective treatment. Prompt treatment with the correct antibiotic, for the right period of time, is what prevents lung damage.

If you haven’t been referred to a respiratory specialist, I would very strongly recommend you locate someone nearby with an interest in bronchiectasis and ask for a referral. You will get a much better level of care that way.

[Hidden in reply to SalvadorBA]

Charlie said it all really. You and your GP can easily find the official guidelines for treating bronch by googling them. Definitely two weeks high dose antibiotics. My bronch specialist has never given me clarithromycin because it is ( in her words) a nasty drug and not particularly effective against the bugs which we tend to get. You really need to find a bronch specialist and insist on being referred. GPs and General Respiratory consultants simply do not know enough about it and GPs generally welcome the expert help of a bronch specialist.

[SalvadorBA in reply to Hidden]

Thanks Charlie and Littleprom, that's all so helpful. I'm seeing my doctor tomorrow and will make all this clear to her. Sadly I have never been referred to anyone despite the doctor knowing I have had ongoing breathing issues (funnily enough ONLY when going up the stairs) for the last 2 years, despite not having a flare up in that time. I can see it's very important that I find a respiratory physio and specialist as soon as possible - I just hope there is one near me here in SE London/NW Kent. Thank-you both again 😊

[Hidden in reply to SalvadorBA]

Glad to help. Just to say, technically, and as much as some GPs would rather we didn’t know this, you can request a referral to any hospital in England. Given where you are, a London hospital would be an obvious choice, and as a specialist respiratory hospital, the Royal Brompton in Chelsea are a good option, but if you didn’t want to travel across the city, then hospitals that house a tertiary cystic fibrosis centre would be my suggestion for where to start looking, as they should have all the right expertise and knowledge needed. For East London that would be St. Barts, and south London is Kings. Failing that, large teaching hospitals would be the next starting point, but you need to make sure the consultant you ask to be referred to has the right knowledge and experience.

[SalvadorBA in reply to Hidden]

Charlie_G. I was wondering if I might ask you for advice based on your experience, as I realise of course you're not a healthcare professional. The results of my sputum text haven't come back yet and my GP now wants to wait before prescribing me antibiotics (probably after I complained that I was ranomly put on a one-week supply of Clarithromycin when my recent flare-up started). I'm sure there is secretion in my lungs but I'm finding it difficult to bring much up, and my voice is especially weak at the moment. The last 2 nights I've woken up with a strong headache (very unusual for me) and last night I had a sore throat and have been sneezing today, which is a sure sign a cold is coming on, so I've just taken the Coldzyme Lilltlepom suggested. My question is, do you think I should ask to be given a generic AB until the sputum analysis comes through, as I think you mooted before, or should I really wait and risk another flare-up, having had the last one just a few weeks ago? I feel very uneasy and vulnerable at the moment, even wearing a mask at home as my son is here (and he think I must be going paranoid!).

[SalvadorBA in reply to SalvadorBA]

PS I realise it's probably unfair to ask that question so I'll try ringing 111 I think.

[Thepainterswife in reply to SalvadorBA]

My husband has emphysema but he was only referred to a respiratory consultant after first my daughter and then I contacted the Gp and insisted that the many courses of AB they were prescribing just weren’t enough . Once with the respiratory team he was given regular x rays, blood tests , nebulisers , pulmonary physio and eventually oxygen therapy plus regular consultations with pulmonary specialists and nurses but that was many years after his initial diagnosis . It may be different with your condition but we found we had to push for the referral Good luck with your appointment, let us know how you go on 🤞

[Lol1944 in reply to Hidden]

Should the original poster not have a rescue pack at home?

[Hidden in reply to Lol1944]

Absolutely.

[Lol1944 in reply to Hidden]

Simply amazing that it is not standard procedure by all gps

[Hidden in reply to Lol1944]

That is why I and other experienced bronchs on here keep insisting that people get themselves under a bronch specialist who will tell the GP what to do.

[SalvadorBA in reply to Lol1944]

Hello and thanks Lol1944, yes indeed, I didn't bk ow they existed till last night, so it's part of my long list to discuss with the doctor tomorrow! Have a lovely evening.

[Lol1944 in reply to SalvadorBA]

Enjoy your evening . Be sure to write down everything for your visit to gp. Too easy to forget something if you are like me

[Lfcpremier in reply to Hidden]

Correct. Sputum sample in first to identify the bug. Doxycycline seems popular with GP's at present.

[Jaybird19]

have you asked to see a consultant in your area.? follow what charlie and littlepom say .

[SalvadorBA in reply to Jaybird19]

Thanks Jaybird19. That is top of my list to discuss with my doctor tomorrow (though I have a few 'top of the lists'!)!

[horseygirl_0103]

maybe call your GP see what he/she says

[Mooka]

I’d do the homework before going if I was you. Although this may already be too late. Save your GP the work of finding a Bronchiectasis specialist and he’s more likely to refer you. Advise him that the specialist can help him to manage your disease. It saves those discussions with receptionists when you take a sputum sample in and you can brandish a letter advising it must be done from your consultant.

[MoyB]

I find that some antibiotics work one time and not another. As others have said, it depends what the bug is that's causing the problem. Funnily enough, I have found Clarithromycin to be my magic potion on two seperate occasions. Each time I had it, I was better afterwards than I had for months before. My consultant agrees that it had somehow found a bug that was lurking that had been making me unwell for months.

Other times, Amoxycillin will do the trick or otherwise doxycycline, but before Christmas I developed pseudomonas and that required Ciprofloxacin.

We've all got different things going on in our lungs but one thing is for sure, 7 days of antibiotics are not helpful for those of us with bronchiectasis. We really do need 14 days, unless the infection is mild and treated immediately with the right antibiotic. Sputum samples are a must.

I'm pleased you are going to your appointment armed with plenty of info. Actually, I just realised the post I am reading is 2 days old, so you've probably been by now! Lol!

Anyway, hope you got on ok and your GP was open to discussion. xx Moy

[SalvadorBA in reply to MoyB]

Thanks to MoyB and Mooka too for recent replies.

I finally saw my GP 2 days ago. I went through a lot of the recommendations from Charlie_G and Littlepom and my GP said she'll find me a specialist clinic, possibly the Brompton in London. Strangely, although I've had breathlessness, heartburn and I think plenty of secretion on my chest this last week, I haven't been coughing anything up till yesterday. I've now provided a sample and am hoping they'll identify which anti-biotic I need before the weekend. My lack of faith in this GP surgery (with no viable option to change) and the system was increased when I found out yesterday that - despite their being aware of my diagnosis since mid-2020 - I haven't been on the 'clinically vulnerable' list of patients who should be a priority for flu and covid jabs, despite my asking them several times over the last 2 years. As some of you have pointed out, it's clear GPs are out of their depth with bronchiectasis and I'll have to fight my corner (and the system) to get the help I need (for a problem which I believe was partly caused by the same surgery and my local hospital's failure to act when I first had some symptoms almost 3 years ago.) Heartfelt thanks and warm wishes to all of you who have replied to my original post - it's such a relief to be in touch with people who not only know about bronchiectasis but are also kind and supportive with their time. I'm trying to run a business so my replies are not always as quick as I'd like them to be.

[MoyB]

Well done for being proactive. With luck you will be seen at the Brompton which, I understand, is one of the best for Bronchiectasis care.GPs are human and they can't know everything about every condition, so this is why we need the specialists to guide them. Any GP worth their salt should be pleased to refer you but sometimes they just don't realise that they are not giving the right care until it's pointed out to them.

I hope your sputum sample identifies something. If it comes back saying, 'normal flora' that doesn't mean that you don't have an infection, just that they couldn't pin it down to a specific bug. My consultant explained that to me and he also said it's hard work getting some other medics to understand it. He said that a GP would be able to examine you and then say if you have an infection or not, just not which bug is causing it.

Don't know if this helps at all.

Xx Moy

[SalvadorBA in reply to MoyB]

Hello Moy, I just noticed I didn't reply to your kind and helpful message a month ago, I'm sorry! I've since completed a 2 week course of the right AB (after taking the wrong ones twice for a week!) and am now getting to grips with (apparently silent) acid reflux which may have come from the AB. I'm still waiting to get a referral date from the Brompton and am still at loggerheads with my GP for their ongoing poor service. Thanks again!

[Digger0]

My consultant said 2 weeks of AB's if needed.

[SalvadorBA in reply to Digger0]

Thanks Digger0 and Lfcpremier for your messages, I said that to my GP but they told me NICE says the AB course can be 1 or 2 weeks, though it seems they're the only 'authority' saying that. Anyway they relented and gave me a second week's dose in the end.

[Lfcpremier]

One week not enough, consultant told me a minimum of 10days.

[Digger0]

Interesting, as the BNF (Doctors Bible for meds) says this for one AB! From bnf.nice.org.uk/drugs/levof...

Description of dosage

[Xlizixx]

my asthma started going down hill in nov. Then just after Xmas developed what I think might have been whooping cough from grandkids. I was eventually give 5 days vibramycin. It worked but after finishing them it came straight back. This happened several times. Also with clarithromycin 7 days. I have been feeling ill for 6 months. I asked doc for a chest ct but they said no because chest x ray was ok. Recently a paid for a chest ct which has shown bronchiectasis and chronic asthma. I tried to get more antibiotics because they seemed to help but doc said no not until a provide sputum sample which is difficult with bronchiectasis. A couple of weeks ago I managed to get some augmentin from an online doctor, prob the only one I haven’t had. I’ve been taking them for 2 weeks and feel much better. Hypertension and fast heart rate gone. Still got lump of phlegm in throat though. Paying privately to see a specialist this week.