Just got my CT scan result

I have been diagnosed with 'mild bronchietasis' - I would hate to think what moderate or severe is like given my symptoms. Excessive sticky mucus which is so difficult to shift without doing huffing, postural drainage, physio (hubby does this thankfully) and take my meds. I have recently started with nebuliser saline 9% solution which helps to moisten lungs - I think it helps. Helps with my postnatal drip problem for which I have recently been put on steriod nasal spray. Life long asthmatic so on 500 Seratide for years now. I have a number of other conditions which I take medication for but the above cause me the most daily problems. I had severe chest infections which lead to pneumonia in 2008 after which my lungs changed. Regretably I did not know that I had bronchiectasis until an asthma nurse on the Isle of Skye suggested that my symptoms sounded like Bronchiectasis. I now understand that I need to keep my lungs clear to avoid infection setting in but it is such a daily battle to do so. I have been on amoxicillin twice in past 2 months. Now GP suggesting I take long term antibiotics but is seeking advice from consultant because my ECG is just under 'normal' and a possible side effects of this drug can affect the heart.

Why am I posting - well I have been helped by reading others posts that I thought I would share something of my own experience but also wanted to know if anyone has more info / experience of side effects from taking long term antibiotics?

Thanks for reading. if you have similar problems and want to ask any questions about my experience I am happy to reply. the more we share the more we learn. We have to put our trust in the medics who care for us (some better than others) but learning from each other ensures that we are better informed and able to advocate more for our selves.

21 Replies

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  • Antibiotic under consideration is Azithromycin!

  • Many of us here are on Azithromycin. I've been on it (250 mgs, seven days a week for two years. I haven't had any negative reactions to it so far and I don't cough up excessive amounts of sputum anymore. So I think it's been helpful and many orhers do too.

  • Thanks Flibberti. I appreciate your post and the link to AD. I have saved a pdf copy and will practice when I have some me time at the weekend. reading it makes sense and links to some of the techniques I have adopted over the years through trial and error. Coughing is so unproductive but often forced by nature urges and so exhausting. I can't think highly enough of my asthma nurse Jenny and my GP both of whom are accessible and always respond to my request to talk with them which is so important as I live on Isle of Skye but currently working in Bournemouth! And consultant is Inverness! Quite. Challenge! I worry about taking stronger saline as I have hypertension but could check with my surgery. I will do/ try anything that might help and keep my lungs healthier for longer. thanks again and I will let you,know how I get on with AD.

  • Hi Duncan I was on Azithromycin 7 days aweek for my Emphysema & Bronchiectasis I had alsorts of problems even tho others have found them ok we are all different

    I think I should of been put on em 3 days a week to see how I would react ... amoxicillin to Azithromycin is quite a big jump and as you have said you have issues with your heart

    Currently am on docxcilyin and others on rotating cycle after being taken of Azithromycin threw adverse side effects.

    Sounds like doc as your best interest at heart as in going to consult your specialist

    What I have discovered is what's a acceptable risk for doctors is not always what I would agree with ... Nothing wrong with discussing all the options

    Cheers

  • Hi DunCaan. First post so apologies for length!

    I'm 35, married with 2 young children and on Wednesday I was diagnosed with mild bronchiectasis following similar phlegm as you describe. I have been given a seretide inhaler and emergency antibiotics but other than that have been sent on my way. I've not had follow up with the gp yet and will go back to see the consultant in 3 months. I've learnt more reading posts than from the professionals. I'm obviously scared about how things will progress, some people seem to live trouble free for years, others find it debilitating.

    In my case I can remember the infection that caused this in the first place. A couple of days feeling rough but no time of work in May 2013. The cough lingered on and off but i felt fine. I should have been at the gp earlier than I did, so now I find myself here. It's hard to accept I could have prevented this from affecting my family and I. It's also frustrating not knowing what illness i actually had in 2013, I am thinking atypical pneumonia from what I can deem.

    The seretide inhaler seems to have dried up all the mucus so now I have nothing to cough up (or rather I hope that's the case as I can't get anything up). However it tend to give me upper chest pain and I'm having periods of getting incredibly anxious, which may be the inhaler or could be just the place I'm in right now.

    I feel quite a novice at all this having had perfect health until now. I exercise regularly, eat well.

    Any advice would be greatly appreciated, particularly on whether I am likely to still have mucus in my chest even though I can't feel it or get anything up. I hope to get a flutter device.

    Thanks, Phil

  • Hello DunCaan and welcome to Phil,

    A couple of things - btw, I don't have Bronchiectasis and I'm no medic

    On Azithromycin, I recall reading reports on it last year saying that the benefits outweigh the risk in taking it if you already have a heart issue. I guess your consultants will look at this and hopefully offer you the lower dose, prophylacticaly at least over the winter months ie Nov - April/May?

    Even if you could just take it for the remainder of this winter it would give you a chance to rebuild your immune system which will be much depleted. Then you must do everything in your power to keep it tip top to fight off those potential pesky bugs.

    On Seretide Phil, my GP upped my dose to 500 2 x daily last winter as a trial before putting me on Azith 3 x weekly. It worked very well so no need for the prophylactic Azith.

    I was taught how to reduce my Seretide slowly over time back down and optimistically to 125 in the summer when I'm normally quite well.

    ie

    AM: 125+250(375) & PM: 500 for 4 weeks

    AM: " 375 & PM: 375 for 4 weeks

    AM: 250. & PM: 375 for 4 weeks etc etc reducing by 125 gradually.

    It worked fantastically. I got down to 2 x 125 daily but it wasn't great so was told to go back up to 250 at night. This is what I'll aim for again from May/June.

    Obviously it wont do for everyone as we're all so different.

    I was desperate to reduce as the 500 really changed the integrity of my skin, it also depletes bone density so it's vital to take extra calcium and/or vitamin D3.

    i wish you both the best

  • Hi, first of all ,don't panic ,I was diagnosed back in 1992 ( I'm 69 now ) and I go to the gym twice a week ,fir about an hours exersise ,and that's the best advise I was given ,( I see your only 35 and have children ) so I'm sure you get plenty of exersise,

    If you can ask your GP to send you to pulmary rehab course ,I'm sure You'l benefit from their advise ,they are specialist nurses in copd ,,,,if can get a flutter devise from your GP great ,,,but in the meantime ,,,I learnt this tip on here ,,,,

    Get a bottle and half fill with water and with a straw ,,,,just blow bubbles into it ,,,this works on the same principle as a flutter ,if you go on you tube FLUTTER DEVISE it shows how they work ,and you can also buy them on amazon £45 ,

    Best wishes,

  • Hi DunCaan Welcome to the site and especially to fellow bronchs. It is a pesky condition and falls between asthma and COPD. It sounds as if you have excellent support from your GP practice. Now, as others have suggested, you need to see a respiratory physiotherapist to check that you have 'got' the technique for clearing your lungs. Another tip that was on here a few days ago was to use a straw and blow through it into water - this shifts the mucous and it 'huffs' up more easily. One of the best tips I got from the site was to use First Defence - or the Boots equivalent Cold & Flu Defence. This is a spray that you squirt into your nose and 'catches' the bugs before they reach your lungs. Could be a co-incidence but this is my first exacerbation free winter for years.

    All the best, let us know how you get on.

  • Hi duncaan, I am asthmatic and have bronciectasis, this was diagnosed after having numerous chest infections and being hospitalized with pneumonia. My consultant put me on flucloxacillin twice a day, have been taking for 2 years now and has made such a hugh difference to my life. I am not coughing constantly and not getting chest infections every other month. I use the flutter device to clear my lungs, this is a great little device to loosen the junk on your lungs. My consultant monitored me every 4 months to keep a check on me, I went last month for a check up and he doesn't need to see me for a year. I almost feel normal!!!

    Take care x

  • Hi DunCaan, I too have Bronchiectasis mild. I spent 2 years being ill, most of the time in hospital with pneumonia. I can go from a feeling of have a cold to pneumonia in 3hours so I have gone on the 3 day on 4 off antibiotic Azithromycin. I call it my wonder drug because it keeps me well and I have gone from feeling like you (and feeling I would die soon) to having a relatively normal life. I have only had two illnesses in the past 12 months and the 12months before no illness. I do get very tired so I do less but overall I would not stop my Azithromycin for anything. Good luck, I know you are feeling down, but ask to see a Consultant asap and you will probably need a CT scan to get the proper diagnosis ( I had 2, 12 months apart before I was diagnosed) you will be feeling down and probably feel nothing worse can happen, but take heart and be assured if you take the Azithromycin you will be feeling better soon. Only the other day one of my friends said to me how happy she was to see me looking so well as she thought (probably like everyone else that I was going to die). I now take every day as it comes and enjoy my life as much as I can. You will need emergency drugs too, which you GP will prescribe as any infection will need to be nipped in the bud. Take care and if you need any other info, pls do not hesitate to contact me. Maximonkey

  • Hi ,I have very similar illnesses to you ,Bronchietis ,asthma and emphasyma ,,,,copd ,,,,I to take ventalin inhalers ,seratide inhaler,and tiotropium inhaler,I also use a nebuliser as and when I need to ,,,,,over the years I have prescribed Amoxicillin ,,,but the last couple of years it has had no effect ,even when i was prescribed 1000 mg 3 times a day ,,,,still no improvement ,these have been my standby antibiotics,,,,,I am looked after now by the copd rehab team of specialist nurses and physio's ,,,,, who have INSISTED That before I start a course of medication ,,,,,I must send a sputum sample in to the surgary to be sent for testing ,,,,,the reason being ,,,,,,if you take antibiotics then send a sample in ,,,the antibiotics mask the infection ,,,by getting a sample before ,,,,,they can see exactly what type of bug / infection it is and the prescribe the correct antibiotic for that bug,,,,,I have found this to work for me,,,,,and recently ,,,after sending in a sample on the Tuesday am ,,,on the Thursday am ,,,,,I was found to have some sort of flu bug ( can't remember the technical name ) I was prescribed Doxycycline antibiotic for two weeks,,,,,,and that has worked ,

    I use a flutter devise to help with chest clearance morning and night and find this helps clear the mucus easier ,,,,I also take mucodyne which helps loosen the mucus making it easier to clear,I wish you well ,best wishes,

  • Hi

    I don't have your condition but you can get the acapella on nhs prescription. Its a mucus clearing device similar to flutter, but you can use it in any position and it can be adjusted for the pressure level. x

  • Like other posters, I have asthma and bronchiectasis (mild). When I finally got the correct diagnosis, I was put on to Azi (250mg on alternate days), and like others it has been a 'wonder drug' for me. It has both an antibiotic effect and seems to reduce mucus production. My cough/mucus has pretty much gone, and I have been discharged from pulmonary physiotherapy. I have also been able to reduce seretide from 500 twice daily to 250 twice daily (and get rid of other meds like omeprazole completely). This is a big bonus - 1000 a day is a 'high' dose and certainly led to side effects like bruising, which are now diminishing. Blood pressure has also gone down to near normal levels. I do also take montelukast daily (for both conditions) and I think this has something of a mucus reducing effect.

    My consultant is very wary of the possible side effects of long term antibiotic use, and as soon as I was 'well' he made me take a summer break of 3 months from Azi. I started again last October, but he has now told me to use it only when I feel symptoms returning, for a two week course. So far, I've not needed it, even when the whole world around me seemed to have a chest infection.

    I do take a lot of care not to catch stuff as far as possible, using First Defence spray and washing hands a lot. I also am following a gluten free diet (for unconnected reasons), no idea if this has contributed to my improvement.

  • Hellow DC and Phil

    'Big up - huge' to your asthma nurse for suspecting bronch - very unusual and quite refreshing to hear.

    Mild bronchiectasis should be treated the same as severe, in that as Flib mentioned the aim is to attempt to keep the infections to a minimum.

    I assume you have both had a ct scan and that you both have respiratory consultants, preferably ones with a special interest in cf/bronchiectasis. The cons should refer you to a respiratory physio who should go through all the techniques of mucus clearance and gadgets to see what suits you best. As has been said we are all different and therefore have our own preferences as to what works for us individually, which is why you should be referred. I know my dear friend Flib prefers AD. For me PD with percussion whilst using an acapella is the most effective, although I do incorporate other methods. Maybe it's because this is what I have been used to since being a baby.

    Gadgets - the flutter is now available on prescription (although your GP may not yet know this). The flutter can be used only whilst you are in an upright position.

    Acapella Choice - I've had 2 from the hospital and bought 2 in my time. I have personally not heard you can get them on prescription and was therefore interested in Lloegr's comments. Will check with my GP. The benefit of the Acapella is it can be used whilst you are in any position - useful whilst doing pd.

    The bubbles mentioned by nanny and Penreath are called the Bubble PEP.

    I will try to put links up for you but not sure how with this new ipad - will do it sepaately in case I lose this whilst pratting about. If I fail hopefully someone will put them up or you can google them.

    As nanny says it is good to get in a sample to see what you are growing and what it is sensitive to. I usually take in a sample at the onset of high temp and dark nasty tasting gunk but start a best guess anitbiotic (which is what the doc can do without the results) as if I waited I would be in hospital - don't have the luxery of time. When the results come it's usually right.

    Agree with Flib re the 0.9 saline. Hypertonic 3,6,or7% is much more effective. I too have hypertention also asthma. It's a case of trial and seeing what is effective for you and what you can tolerate. I use hypertonic 7% but if asthma is particularly troublesome will use the normal isotonic 0.9%

    I can't tolerate Azithromycin (dearly wish I could). I have heard from lots of bronchiectatics that they have been very beneficial for them.

    Good luck for the future. Will have a go at links but I'm not holding my breath (probably best not to anyway!)

    love cx

  • Thank you all so much for taking the time to reply to me. I have found your replies, interesting and above all informative. I will explore further all of the advise given as I know that the best outcomes and good health are best achieved through keeping my lungs clear and bug free. Exhausting as it is specially when working full time in a very stressful environment. thanks again - hope Phil-R you have found posts helpful too.

  • I was diagnosed last year after five yrs of winter infections with the latter being the worst. I had ct scan and was diagnosed with bronchiectasis chronic bronchitis and i already was asthmatic. Oddly for me the five yrs of getting worse was linked to inflamation in my body but i had no obvious swellings anywhere but i did feel odd. Last year my right hand swelled up in a couple of hours to double i was put on naproxin and saw a rheumatologist within a week where a diagnosis was made rheumagoid arthritis. I think the meds for that and inhaler changes have helped. I have emergency meds at home and this winter ive had one chest infection. Im back riding my horse and basically got my life back . Keep well eat well and exercise keep an antibacterial gel or spray to use when out especially after pushing supermarket trollys . Change your tooth brush after any snuffle and keep yourself hydrated xxx

  • Hiya tigershay

    Your post has really interested me. I am awaiting an appt to see a lung specialist as I've been having lots of chest infections since Sept last year, I am also asthmatic.

    I have also been under a Rhemy since June 2013 as my CRP has been so high showing that there is inflammation in my body. I too have had swelling of my hands and ankles in the past. I am currently on reducing steroids, Methotrexate & Hydroxychorquine for a Connective Tissue diease.

    I have had pet scan, ct scan of my lungs which shows some abnormalities in the small airways.

    I know very little of Bronchiectasis so would welcome any info you might have.

    Many thanks

    Lilacwine

  • Yes indeed Flibberti, I've also been refused PR because my major diagnosis is Bronchiectasis. At this stage, it's clear to me ( and my doctors too, I suppose) , tha my Bronchiectas has caused me to suffer a degree of several other illnesses. I was very disapointed as I had bernooking forward to it but I've worked out my own ways of exercising now.

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