hello, I'm a male aged 60, yes I know I do'nt look a day over 45, thankyou! recent repeated breathlessness for no apparent reason, repeated chest infections prompted firstly a chest xray which perplexingly was "clear" then after repeated visits to my gp finally a ct scan of my lungs showing the bronchietasis, which I had never even heard of! currently taking steroids and co-amoxiclav neither of which appear to help, Ive got a Symbicort inhaler as preventer and Salamol as relief, once again I have to say that neither appear to help at all which alarms me no end! Got an appointment on the 20th with a respiritory consultant so fingers crossed for some relief, Anybody else relate to this please? I'd be delighted to hear from you, thankyou.
hi David....if the co-amoxiclav is not effective then presumably you have a bug in your sputum which is not sensitive to it. Did you send a sputum sample off to the hospital before you were started on the antibiotic? Just giving a random antibiotic is not the way to treat this disease.
Sadly we are often harbouring the bugs permanently and they flare up into a full blown infection from time to time.
Hopefully once you see a specialist, I hope with a special knowledge of this disease, you will start to get the correct treatment. I hope you are not taking oral steroids.....inhaled ones help, but I think oral ones are contraindicated.
I think you will see from other posts that GPs seem to have little knowledge of this disease.
At least you finally got the CT scan...how long did that take to happen from the start of your problems I wonder.
David, I am 53 and was just diagnosed with this in November. I am on flovent 2x a day. Dr says I have a mild case. I found out I had this by seeing a cardiologist! I was having random chest pains--mainly on the left and some shortness of breath that was random--sitting or exercising--it was just kind of come and go. I had an ekg, stress test and a calcium score--all normal as far as my heart, but the calcium score is where he saw the bronch and referred me to a pulmonologist.
I had never heard of it either, so I did quite a bit of reading, got some expectorant and starting taking vitamins (couldn't hurt, right?). I have not had the chest pain since, so I am assuming it was from from mucous gathered in my lungs. I have also not been sick other than a cold/sinus infestion about once a year. I am assuming that the cold I had last winter was from the bronch because I had a harder time getting over it and felt fatiqued for quite some time.
I don't know if you exercise, but I was relieved to discover that exercise is good for us--especially swimming. I go to aqua fitness 2x a week and can tell you that really gets the mucous moving out of there and I feel like I breath better. I'm still learning all the ins and outs of this condition, as you are.
I also had asthma as a child, but this is a bit different. Annoying just the same! My goal is to keep this from getting worse and to keep working out and using my lungs.
Good luck to you!
Don't take any inhaled steroids. So my comment on how they effect antibiotics.
hello Ruthie, as it happens I'm awaiting the results of my latest sputum samples, tomorrow I hope, the strange thing with them is that the previous two entirely seperate sputum samples contained a bug that by all accounts normally would be in the stomach?? no further explanation from gp, he just did'nt know. So I'm guessing that is why the antibiotics are failing, also just finished a 5 day course of steroid tablets without any benefit, Prednisilone I think is how you spell it' My goodness its frightening having a constant wheeeze and rattle at the back of my throat, I get a few minutes relief with a throat lozenge, does'nt last sadly. I reckon I will have to go back to the gp tomorrow and see what's next to try. Bless you all for replying, I will get round to individual replies soon. oh by the way Ruth, it's probably 12 months perhaps more before I got the ct scan, had 3 xrays all negative.
hiya td3, thanks for your input! sadly I cannot swim despite having been born and raised on various lighthouses as a child, so that exercise is'nt available, yet. I do walk the shoreline most days so plenty of the freshest air. May I ask what vitamins you found to be so helpful please? I take vit d, co q10, b complex at present, thanks
hello George, mmmm lots to think about for me is'nt there? for sure the inhalers are useless at providing any relief so avoiding them would'nt harm just now, I had 5 days of Prednisilone steroid tablets, finished today, no help, have constant phlegm and rattle at the back of my throat these past few days, almost feels like my throat wants to close. Doctor tomorrow I reckon!
I am on a probiotic, basic am, basic pm, vitamin d, spirulina, antioxident, omega 3, anti-inflammatory enzyme formula, magnesium, osteo advance. I have osteoarthritis and allergies, so some are because of that. I do feel like I have more energy since I started them.
Hi Dave. I had similar problem to you to for 6 years. Lots of gunk all sorts pills etc. Consultant put me on Azithromycin. It worked. Am a new man now for last 4 1/2 yeras. No more infections or flare ups etc. Does not work for everyone but often does if your problem is bronchiectasis.
If you go onto drugs.com and look up AZITHROMYCIN you will read a lot of reviews. Two people from patient.info are now much better after taking my advice. Sounds too good to be true? Maybe but it worked for me. Take care and good luck. John
I had repeated prescribed antibiotics for chest infections over a number of years and eventually asked to be referred to a specialist. Had already had the usual xrays which show nothing. The specialist got me a ct scan which showed up the Bronchi. Apparnetly it doesn't show on an xray I had lots of bronchitis as a child and apparently this is the cause of it for my damaged lungs. Doctors just kept telling me it was from my smoking 40 years ago. I really believe it is a waste of time seeing a GP they really don't appear to have any knowledge at all. They had tried me on all the inhalers none of which made a bit of difference. This group is the best thing I have found for help. I have to puy frequent samples in to find which bug we are tackling at the time. As has already been said not any antibiotic cures all bugs. Have you done any breathing excercises or postural draining you will get advice about these on here and it is neccesary I assure you to keep the bugs from breeding in your lungs. Any problems try and contact your specialist for advice not your GP.
hi David...that's interesting. Some doctors think that gastric reflux can cause or exacerbate bronchiectasis..do you have reflux or heartburn? it could be that omeprazole would help you. Sometimes no bugs are culture in the sputum because too much time has elapsed from collecting it to it being tested....
But really as everyone else says one's GP is usually useless and only the specialist will help sort you out.
It's not a nice disease but most of the time you can live a normal life, it just hits you with infection just when you are least expecting it.
yes sadly Ruthie it would appear that a long time untreated hiatus hernia is the cause of this, I woke up on many occasions choking on the vile acidic bile in my throat! this has apparently caused a "thickening" of the skin inside my throat plus the damage to the bronchi, the joys of getting old (not)
Hi Dave. Don't worry. It is not a death sentence . I was diagnosed Brochiectasis, emphysema, hiatus hernia etc12 years ago. I keep acid down with a brill drug called Famatodine. Pepcid is real name. Been on it 18 years. Never get replux anymore. Carefull what I eat, absolute no ready microwave meals. Keep off citrus fruits to. 4 1/2 years ago I was very ill with copd bronchiectasis etc, was on oxygen for 5 years. Thought there was no hope. Suddenly a consultant put me on a antibiotic called Azithromycin. No more 'flareups' no need for oxygen and I have a fairly normal life. The green 'gunk' is useally produced in the bronchiectosis. Bronchiectasis is actually scared lung tissue usually from pheumonia at some time or smoking. This Azithromycin does not work for everyone but it did for me. Try it, nothing to lose. Only took 4 days to sort me out. I take 500mg 3 times a week. It is still working.I also have 500 mg seretide and tiotropium. Well all the best and don't worry.Take care John
Hi Interesting to read all these comments .sooo informative. after 7 years of badgering my current consultant i still have no clear idea of the path this terrible desease is taking. luckily this guy can write the phrase " its reassuring " but little else . after undergoing surgery to remove lung tissue from asbestosis damage i feel as if i just jump from one crisis to another. now i suffer acid reflux and bloating which i suspect is related to the bronchiectasis damage. Gps are in the dark regarding this disease. and without forums like this so would we be. I thank you all for you input
Hmmm Having read my own comments i seem like a right whinger.. not intentionally , just kinda frustrated from lack of progress which i basically put down too little time, and too little funding. for the medical profession , in many ways they have my sympathy.
Hi David - welcome to the forum.
As I have said on here many, many times I have had bronchiectasis since I was a toddler and I am 67 now. So unless you are very unlucky it is something you can live with. I worked from the age of 16 to last summer when I was 66 so I am a testament to that.
A word for GPs - bronchiectasis was thought to be one of those complaints that had more or less died out because it was associated with childhood illnesses that are now routinely vaccinated against. I got mine after a bad bout of measles when I was 13 months old. A lot of GPs can be clued up. My GP when I lived down south sent me to the Brompton Hospital and it has been brilliant. It's a bit trickier to get down there now I live in Worcestershire but I will try to go for as long as possible as they are world experts there.
Trouble with this wretched complaint is that the treatment is fairly primitive. Infections treated with antibiotics, do your postural drainage regularly, learn breathing exercises, take exercise, drink water and get enough rest. Well...I do my postural drainage as often as I can but life is a bit hectic at the moment (Dad in hospital) so its rather by the wayside, I take antibiotics when I need to (Azithromycin) and I drink a lot of water! I hardly ever rest and I get exercise when i get a minute. I am not perfect. However, keep your sense of humour and if you feel anxious about it all use your specialist appointment to tell them everything that worries you. Take care of yourself.
hello Operalyn, lovely name, I can hear you singing from here (far north highlands of Scotland) yes my sense of humour, if it can be called that, is essential for me especially at the moment. Interesting to read your story over quite a period of time, and the fact you mention Azithromycin, it was mentioned to me yesterday so I shall enquire with my doctor later today at my appointment. Must say that my condition has worsened slightly these past couple of days and the Co-amoxiclav are useless! an awful tightness in my throat, upper chest, awful phlegm, feel a real shortage of breath these past few days so am anxious for resolution, and of course my anxiety probably makes things worse. Thankyou for your time Operalyn, I will update as and when I find out more
hello reg, thankyou for taking the time to message me. I would'nt say you are a whinger at all! on the contrary it is me doing the whinging! but I scared myself with all the unknows that are going on with my health, the erratic short of breath thing is so disconcerting..... the acid reflux has got a lot to answer for that's a fact, the best advice I ever got on that was raising the head of my bed by 6" instantly stopped the terrifying nightime event when the I would awaken choking on the vile acidic mess that had come up my throat....yuck. and almost certainly caused this bronchiectasis.
hi dave. you are doing exactly the right thing by communicating with those on here with long term experience of this disease im talking about the.. you are not alone in this kind of situation,, and you are also right i think about getting uptight about how you feel its kinda natural but counter-productive in that stress manifests itself in many ways and a tightening of the chest wall muscles is one of them as well as exacerbating the churning stomach syndrome. co/amoxiclav is a wide spectrum antibiotic given in the hopes it will be a magic bullet to combat the bugs that thrive in over secreted mucus. but you need to have luck on your side if it is to overcome the very bug that is invading you... so far in that respect i have been lucky and living by the coast lends fresh air and opportunities to exercise away from the population and the threats to health they hold. all in all i could be a whole lot worse, so i wish you good luck and do try to relax a little
hi reg, just posted on here same time as your good self! see above somewhere ^^ I too live within walking distance of the coast so I have fresh germ free air to enjoy. You are so right about me needing to relax, I get so wound up about things sometimes, thankyou for your advice, and yes thank goodness for this forum, bless ya all