Hi all, was diagnosed with bronchiectasis and chronic asthma in may. I had had a cough since Christmas and was given several short courses of doxy, which would work and when I stopped chest infection would come back. When I was eventually diagnosed I was given a 2 wk course of doxy but they did not work. Since then have had co amiclav which worked but when I came off them, chest infection came back albeit a few weeks later. Same with azithromycin, which I was told was not suitable for me due to heart and liver issues. Now back to square 1, feeling terrible with cough, tight chest. Gp has just given me more doxy! I will be amazed if they work. Does anyone have this problem with the never ending circle of antibiotics? BTW am unable to produce a sputum sample despite being on carbocysteine.
antibiotics: Hi all, was diagnosed with... - Lung Conditions C...
antibiotics
I too have bronchiectstasis and chronic asthma, diagnosed in 2012. Fortunately I was able to take Azithromycin because I don’t have heart and liver issues, and it works for me. I haven’t had a chest infection for about 8 years. In fact the only recent chest infections I’ve had were when I was taken off Azithromycin and put on Doxy. The third infection ended up with me in hospital for 7 weeks with pneumonia!
Thanks Helen, why did they take you off azithromycin and put you on doxy? And how soon after were you put back on Zithromycin? Do you manage to cough up mucous? Sorry to bombard you with questions.
Questions are very welcome. We’re all different but someone might recognise parts of my story that resonate with theirs, and so may be answer some questions. I also have rheumatoid arthritis, diagnosed in 2004. My medication had stopped being as effective as it had been. My rheumatologist was on a sabbatical so I was seen by a registrar, who read my current list of medical and then prescribed Hydroxychloroquine for the RA. When I got home I read the information leaflet, which said you can’t take it with Azithromycin because of the risk of heart disease. I rang the RA helpline who after consultation with my lung consultant, told me to stop taking the Azithromycin. I was put on Doxycycline, which had never worked for me. I stopped the Azithromycin in December 2023 and ended up in hospital with pneumonia at the end of March. I was taken off Doxy in hospital and had several weeks of IV antibiotics. I went back on the Azithromycin on April 11th when I was discharged from hospital. If there’s anything I’ve missed please let me know.
Have you had Prednisolone with the Doxy? This seems to be the normal practise. Many people hate it, but it does seem to help the anti biotic. I think it deals with inflammation.
Yes I've had prednisone but because I've got tachycardia it becomes very uncomfortable but thanks for your help.
Why is that Xlizixx? - I have Tacky/Brady Syndrone and have had Ventricular tachycardia without any ill effects from Pred, i know Pred thins bones, and can get at your gut,
Oh I see, heart pumps in my chest, it was uncomfortable. Would it help with bronch? Willing to give it a go though.
My rescue packis Doxy and Prednisolone - Azithromycin makes me sick, was in bed 3 days being sick a few years ago. I don't care for Doxy, would rather have Oxytet. But things change,
Albert, I have rescue packs of Doxy and Predisilone for asthma exacerbations. After some time Doxy did no good. Predisilone steroid ( clears inflammation ) was also slower to work? So went to a consultant privately who recommended a high resolution CT on my lungs. Revealing cylindrical bronchiectasis. So now waiting for cardio pulmonary physio. I am 70 in December had asthma all my life.
Before you consider azithromycin, you need to eradicate the infection you have had for months. Azithromycin works by keeping the beginnings of an infection from taking hold, it is not an antibiotic to cure established infections.
A sputum sample is essential to eradicate your infection. Then the GP can test your mucus and will know what bacteria is causing it. Then prescribe an antibiotic which is sensitive to it.
I would look on YouTube and learn how to do a huff cough. This would help you produce a sputum sample.
Many of us with bronchiectasis also nebulise 7% hypotonic saline as it's brilliant at loosening the mucus to enable you to cough it up. I bought my own neubilser and saline after researching how to clear my chest. The NHS are reluctant to provide neubilsers who h is a Shane as this treatment is the gold standard method for getting on top of exacerbations.
Good luck to you. Hope you soon feel better.
Just to let anyone reading know, after many courses of antibiotics for continuous infections I was put on a 3 month course of Azithromycin 500mgs. It worked. Brilliant result for me because I was able to finally begin the journey of rebuilding my immune system (which of course was shot to pieces due to 5 x pneumonia, endless infections and antibiotics). My granddaughter has also been prescribed pediatric Azithromycin to get kill off of an infection . In my family we always take pre and probiotics after a course of antibiotics for a couple of months afterwards .
Thank you Beccles, yes I bought my own nebuliser but was told by nurses not to use anything other than 0.9 nebules?
Unfortunately most GP practices lack the specialist knowledge about bronchiectasis. Using 0.9 is not going to help much, 3%, 6% or 7% hypertonic is much better at loosening mucus.
I had mine approved by my hospital consultant who wrote to my GP to have it added to my repeat prescription. Whilst waiting for the prescription I bought 7% from Amazon.
Did u have a ct scan?U may need a longer of course antibiotics to clear infection.
Do u not produce mucous?
Do keep active,increase fluid intake and take measures to avoid viral infections which can trigger both asthma+ bronc
Yes Pat I did have a ct scan. I had been on azithromycin for 3 weeks but they said it was not suitable for me long term. I am now on doxy 2x day. I hope it works but the mucous is stuck in my throat now taking carbocisteine so hope it will help me. If I can't produce mucous they will have to do a bronchoscopy.Thank you for your help.
Have u seen a lung physio to teach u to get it up
I have been shown and sent a video
I can't use carboisteine but did do research into Mullein for loosing phlegm and it really works for me and it is natural
Thank you, is it on prescription?
No herbal and I also use a salt pipe both I purchased. But I use the huff and puff and I tip before going to bed. It's about looking after yourself and learning as much as possible about the condition. Good luck
It's a great shame you cannot produce a mucus sample especially as this has been going on so long (I've been there too). Because of my asthma I often can't either because coughing closes my airways but I have managedit in the past with 'The Huffing Technique' - there are other methods too. Speak to your gp about this as there are 3 types (that I know about) of bacteria that can colonise the lungs. It really really needs investigating to eliminate this possibility and ensure you're on the correct antibiotic. Whilst this goes on more damage is done to your lungs.
If you're in UK you could ring the helpline 0300 222 5800 to speak to a professional 09.15 to 5pm on week days.
Thank you Peege, yes I have got to try harder with the huffing technique. How do you know whether it's asthma causes symptoms or bronch because I am using my blue inhaler a lot?
I am also on azithromycin three times a week permanently. But when I get an infection, I stop azithromycin whilst the infection is treated, then resume azithromycin afterwards.
Please do follow all the advice of Peege; she really knows what she's talking about. I have bronchiectasis, but mildly only now. Good luck.💐💐💐
I always had difficulty coughing up mucous too. Physio advised me to take my ventolin inhaler 20 minutes before chest clearance, and, using a pep device, and the huffing technique, made it so much easier and more importantly, it worked for me. I hope you get the answers you need xx
Yes, me, same as you, Have the same scenario all year,
Weaning off Prednisolone that will be 2mths of them . And 3x daily Hypertonic nebs and my inhaler x 3 daily.
Yes, I've been on the roundabout too! Infection, antibiotics, infection, different antibiotics, more infection...
I submitted sputum samples but all came back as 'normal flora'. Then one picked up colonising pseudomonas. The GP I spoke to said I didn't need treatment for it unless I had symptoms! What on earth do they call symptoms if umpteen months of needing antibiotics doesn't count?
I saw my resp consultant for my annual check up a month later. As I related my recent history he said, 'And I suppose the GP said no treatment was necessary.' He'd heard it all before. He said that, in people without chronic lung disease, pseudomonas can cause no issues and be left alone. It's different for people with bronchiectasis.
He put me on ciprofloxacin and in two weeks I was a new woman! Well, newish, anyway. Lol! I then started Azithromycin and haven't looked back.
Have you been referred to a specialist? If not, I would suggest you ask to be. If you can afford to pay for an initial private consultation it may be worth it to get the help to get out of the cycle you are in.
Lots of people on here will tell you that GPs do not know enough about bronchiectasis yet. My own GP, when I managed to speak to her one time said, 'Oh, you're complicated. Your condition goes beyond my skill level. I'll refer back to your consultant for advice.'
I think that was an honest and helpful response. If only all GPs would acknowledge what they don't know.
I'm not suggesting you necessarily have pseudomonas, by the way, but it sounds as though you have some infection lurking deep down. As others have said, it's worth checking you tube for videos on chest clearance. I know it can be difficult to produce a sample, but it's worth it if you can.
Best wishes,
xx Moy
Your GP was spot on Moy. GPs aren't meant to know everything - they are gatekeepers and should know when to refer patients on. Sadly some seem too arrogant to admit when they do not know something, unlike yours!
Thank you Moy, yes I consulted one privately who referred me to specialist nursing team at hospital, they suggested I may have pseudomonas, you are right I have to try clearance.x
I used to get chest infections, one after the other. Since around April 2018, I've just had one, but quite big; pneumonia and pleurisy, when I was in hospital for 10 days. That is, since finding and eradicating Black Mould in our bathroom. We moved into our present house in August 2013, and had chest infections continuously from then, but I had a lot of infections in the previous home, and the lady of the family who bought that house from us, died of a fungal lung infections not long after moving.
As I had a lot of infections in 2016, I kept a diary in 2017, and recorded 18 infections. So on average one every 3 weeks, and almost continuously on an antibiotic.
At the end of March 2014, I had a chest infection with a bug, Staphylloccus Aureus, which hardly took any notice of oral AB's, and was knocked out by an intravenous AB after getting a CT scan in the November. The scan showed I now had Bi-basal Bronchiectasis. One week later, had another chest infection, cleared up with an oral AB.
So, make sure there is no mould in your home. Anywhere where water can leak. Roof, overflowing gutters, bathroom or kitchen. Ours was leaking bath drain, and the 70% of the floor was covered in Black Mould.
I went through what you are going through a few years ago. The only antibiotic that gave me any relief for a while was ciproflaxin. Eventually during an operation on my sinuses pseudonymous was found to be the bug. It’s something that people with Bronchiectasis are prone to. The only oral antibiotic that is effective is ciproflaxin. Eventually that stopped helping and I had a two week course of iv antibiotics followed by nebulising an antibiotic to keep the pseudomonas away. BTW it rarely shows up on sputum samples and, in my case, even a bronchoscope couldn’t isolate it. I hope you get something that helps you soon. It’s really awful to be feeling like you are.
I have COPD and after last chest infection which cleared up after three courses of antibiotics and steroids but was left with a cough which wouldn’t go away. Sent for a chest X-ray which was clear. So I tried hay fever tablets, cough went away nearly instantly I have been taking them every day since and no cough. Just buy cheap ones from Savers
Try the steroids, even if you take a weeks worth, you may need longer though
I too have Bronchiecstasis along with COPD. I was diagnosed with COPD in 2012 .. never ever smoked .. Bronchiecstasis was as a result of an aspirational pneumonia I had. I was in ICU for 12 days .. on life support for 4 days in an induced coma. Both lungs collapsed. Since then I have had the same experience as you. I can't produce sputum samples either! Miraculously .. I managed to get 2 .. which were tested. Before this I was on Amoxicillin, Doxycycline and another I can't remember .. I also take Prednisolone as part of my emergency pack .. which I am weaned off after the 5 days of 8 tabs of 5mg. Every few weeks I was back on the emergency packs as like you .. they didn't work. They have now found pseudomonas and Streptococcus which they are now treating with a two week course of Ciprofloxacin. They are also sending me for a three month course of antibiotics via a nebuliser. Also sending me for a bone scan for osteoporosis because of all the Prednisolone I have been on.I think you need to see your GP again .. I take it you have been referred to a Respiratory Team?
Good luck .. I know what you're going through x
Thank you Mrs Bumble that's really helpful and I'm so sorry for what you've been through. Yes have seen specialist and got nursing team. They need a sputum sample so when I finish the doxy have to try again. On carbocisteine so I'm still hoping to do the sample, otherwise will prob have bronchoscopy. I do have some pred so was wondering if I should be taking that as well just in case my asthma is causing problems as well. GP is not really interested and just asked me what I wanted! Cause she doesn't know. Nursing team waiting for consultant to get back to them. I was naughty and sourced azithromycin from on line pharmacy, risky but they worked! Nursing team and gp said they will affect my liver and heart so made me stop them. Now back to square 1. Blood tests showed no problem with my heart and liver so quite angry now.
Oh blimey!! Not a good idea to self prescribe to be honest. Though I can understand why you did it!! I too am on carbocisteine .. 6 a day (3 x 2).Not good your GP has that attitude!! I had a similar experience recently when I went to my GP as a result of them making the appointment as a follow up .. and my GP said "you need to speak to your respiratory team" .. not good when that was over a week away .. and I'd not slept for 3 weeks!!! I did speak to my specialist and I told her what my GP said .. she wasn't very happy!
Glad the antibiotics you took didn't cause you any problems in the end 🤗.
X
I went through a similar cycle of infections and nothing seemed to work, then my Consultant tested for Non Tubercular Mycobacteria.
After a six week wait, it turned out that I was positive for this bug, which needed a years worth of AB’s.
Thank you, which antibiotic was it pls?
This is treated with the same antibiotics as TB. Azithromycin, Rifampin and Ethambutol.I only mentioned this as it is one of many different Bacterial infections. It is worth checking that the tests have been done.
It doesn't show up on routine sputem samples.
Thank you Ortho so how do they find out if you have it?
Just on a Sputum sample, unfortunately it has the same symptoms as most infections.
Night sweats and blood in Sputum are a good indicator.
I wouldn’t get too worried about NTM as the treatment is excellent, but if you are undergoing constant infection which is not being sorted by the usual antibiotics, it needs to be ruled out.
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