I am 65 and have been newly diagnosed with bronchiectasis . I suffered for years with infections and breathing difficulties that my doctor said was asthma and put me on sprays that didnt work. Then my doctor left and my new doctor sent me for a ct scan which showed the brochiectasis. The hospital showed me breathing exercises and wrote to my doctor who put me on mucodyne, which has been fabulous but the next dose the chemist gave me creo which didnt work, made me feel sick and my cough came back. I ordered this new dose and asked for the mucodyne, only for the prescription to be rejected as yet another new doctor doesnt think this should be a repeat medication. Is there a time limit to be on mucodyne, my chest now feels really congested and am not sure what to do, the last time I had an infection the doctor refused antibiotics saying it doesnt work on a virus and it took months to get right. Is there anything else I can treat myself with?
Irene
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Izb1
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Welcome to our friendly site Irene. Someone will be along to give you some feedback on your query. You could also call BLF and ask to speak to one of their specialist nurses. There are a number of us with bronchiectasis - I hope Hidden will be along as she is a fount of knowledge.
Thank you Pentreath, it does look like a friendly site with really good advise. I think the idea of a diary is great and may start one in the new year. Hopefully littkepom can put me straight, she seems to know alot about this.
Hi stumpy55, an emergency pack has never been mentioned to me, do the UK hospitals give these out? If so I will ask about this when I request to go back and see somebody. I go away next week so time is short and may need to see my daughters doctor for mucodyne. Thanks for your suggestion, it all helps.
Your g.p should give you a prescription, if he won't then if you attend the heart and chest unit, they should help you. The consultants advice goes over the G.p. Failing that have a word with the pharmacist at chemist. Have a good Christmas, I take it your going to your daughters. ✋️😊
Hi stumpy 55, yes I am going to my daughters for christmas, she used to live in Tenerife which was lovely to have some winter sun but has moved to Cardiff for my grandsons education, so will be a different time this year. Im sure the warmth in winter did help my chest though, I know it did help my rheumatoid, perhaps I will find a sauna, could help. Many thanks for your reply.
Hello Izb1, another bronch here. I've been taking mucodyne (Carbocisteine) for about 10 years now, on repeat prescription with no problems. The only thing I can suggest is to get in touch with your hospital consultant and ask them to write to your GP to insist on you getting your mucodyne on a repeat prescription. Others may come along with other suggestions, especially Littlepom (mentioned by Pentreath).
Hi poemsgalore, not sure who or how to get in touch with my consultant, if I have one. This is such a good friendly site, I am sure to learn alot, but think I will be going back to my gp first. Thsnjs for replying
Telephone his/her secretary, the telephone number should be on the hospital website, or phone the hospital switchboard and ask to be put through to the secretary. You are the patient and you should be having the right treatment. Many GPs don't have a clue about bronchiectasis. There is a very good booklet downloadable from Chest, Heart and Stroke Scotland. You could print out a copy for your GP and give it to them 'for interest'. I am afraid you have discovered what many of us with rare diseases have discovered, that you have to be very proactive, and that you have to be well to be ill. As one who has now collected four rare diseases I entirely sympathise with you xxx I have just reread your post and see you are not sure if you have a consultant. If not you would be wise to insist on being referred to an expert in bronchiectasis, usually at your nearest University Hospital. Mine is Bristol. You can usually find out by looking online.
Hi Carnival 567, so sorry to hear that you have four rare diseases, dont know how you all cope. I was fine until 62 and bam everything seemed to come at once, or perhaps I just didnt recognise the symptoms. I will download the booklet you mentioned for myself as well as the doctor. Many thanks I x
Hi Irene, ive had Bronchiectasis for years. I do also have asthma and gastric reflux but I rake carbocistine, I think similar to mucodine, it does help with mucus production, might also be worth asking for a flutter valve, it helps open up thr airways...I take it once a day; at least. Physio or gp coild prescribe Hope helps
from someone like me who has had bronchiectasis all my life( i am in my 70's) it is trial and error, i have been on all sort of medications but you will find the right ones eventually but only if you are lucky and manage to find a good consultant which you should have if you have been diagnosed with bronchiectasis. i find mucodyne was no help to me also, but there is a lot more alternatives that will really help., so good luck with that.
Hello Izbi1
Well, you are in the midst of confusion aren’t you ( mostly on the part of your various GPs). This must be very worrying for you and whilst they prevaricate and show their ignorance your health and quality of life is suffering.
First of all, were you diagnosed by ct scan? Was this done by a bronchiectasis specialist? Bronchiectasis is very complex. You need to be under the care of a bronchiectasis specialist and their team, which includes physios who can teach you how to expel mucus from your lungs without having to take such as mucodyne.Mucodyne has never done anything for me.
Most general respiratory consultants know very little about Bronchiectasis but hate to admit it. This is why you need to check whether you have seen a bronch specialist. If you have, they should have written to your GP and told them how to treat you.( more about GPs and bronch coming up).Look for a bronch specialist in your area. They are usually based at large teaching hospital. Take the name to your GP and insist on a referral. If they try to refuse tell them that your bronch is obviously not under control and that you need a consultant who can address this. Do Not take no for an answer.
Now, the GP. It is obvious that your GP is completely ignorant of how bronch manifests itself and how to treat it. With bronchiectasis the infections are called exacerbations. They occur when a secondary bacterial infection sets up in the (damaged) lungs following a virus or it can just occur suddenly for no apparant reason. The patient is the best person to know when this is happening because we recognise how we feel. This is not a virus infection and needs treating immediately with the right antibiotic in a large enough dose for at least 14 days. This is why most of us keep a rescue pack of our usual antibiotic at home to begin as soon as we feel it set off. My GP supplies mine, having been told years ago by my consultant to do so.
Some people take mucodyne and find it helps. My consultants have never refused it to me but don’t like it. If you can learn the tecniques it is probably better to expel the mucus by your own efforts. Your GP should not be refusing it to you at this stage though. It is something that you would need to discuss with the bronch specialist.
There is lot to learn but I hope that I have started you off with something to help you. I’m sorry that you are having such a hard time with the ignorance of the docs but this is life with bronchiectasis. We have to be very proactive in sourcing our care and vociferous in obtaining it.
Good luck. When you get it under control you can live a positive and fulfilled life.xx
Hi littlepom, wow this is such alot of information, you certainly know your stuff, thank you very much for taking time out to inform me. I had a ct scan can you believe it on Tescos car park, and my doctor sent me to the hospital. I dont think the doctor I saw was a specialist in bronchiectasis but he did sort of explain and he did refer me to a nurse for breathing exercises, he was the one who wrote to my doctor for the mucodyne and inhalers and must admit I do feel alot better using them. Not sure I have made a rod for my own back as I refused to go on methotrexate when i started with rheumatoid arthritis, I have changed my whole diet because of this as I believe it is gut health that keeps ra at bay and really do hate to take medication, so am very careful what I take. Thank you for your advice, will certaintly take note.
Really don't blame you re the methotrexate. My rheumy said because of my BE she wouldn't prescribe it for me and I did say that I wouldn't take if if she did.
Think we were both singing from the same hymn sheet, which is when things work best.
Good advice littlepom, I suffer with bronchiectasis and have recently been discharged from hospital. I had exacerbation problem, over the past few years have had these aweful bouts of it. My problem is I panic because I can't breath and as you know the more you struggle the worse it seems to get. My hubby is my strength but he worries bless him. I know how I'm suppose to breath but panic takes over.
Hi stumpy, I’m sorry that you have these horrible panics when breatlessness is a problem. It is difficult for me to advise because I don’t know which circumstances make you breathless. If it happens when you have an exacerbation it is usually because the extra mucus which has probably become very thick is stopping the air from moving in and out. This means more breathing exercises and renewed efforts to get the gunk out. This is where physio is more useful than drugs like carbocysteine. When you use breathing tecniques to expel the mucus it also gives you more control overyour breathing in general. Trying to stay calm whilst you do this isvery difficult if you are not used to it but if you can get into a rhythm of the cycle it can help you to cope better. At least you have your lovely hubby to look after you. I have never had anyone who did that for me, even though I was married for 22 years. I just had to get on with it.
You could say that I was lucky (?) as a child. My mother refused to let them operate on me when I was three even though a panel of ‘specialists’ told her that she was doing the wrong thing. At 6 she found an amazing ‘crazy’ doctor in Leicester who gave me the treatment that basically we have now. Oral antibiotics and nebulised antibiotic, through oxygen because nebulisers didn’t exist then. Together with six years of regular bullying by physios I was taught how to breathe and forced to make emptying my lungs the thing which I did before anything else. I went on to grammar school and have had a full life. It is exhausting, it can be depressing and the struggle against government indifference and medical ignorance is infuriating. The best thing about this forum is finding people who have the same daily experience.
Hi littlepom, sounds like you have had a rough deal getting this when so young and having no support from your partner, no wonder you get down. Is this a progressive disease? I am dreading getting to a point where I cant breath properly as I know I will panic and probably pass out, luckily I think mine must be quite mild at the moment and am hoping to have enough knowledge if I do get to this stage so that I can learn how to handle it.
Well, I have had extensive bronch for 65 years and I’m still going strong. I am not an invalid and have never considered myself to be so. The thing about bronchiectasis is that it has to be controlled by the person who has it, assisted by the medications ( antibiotics chiefly) that prevent or treat exacerbations. It is progressive in that badly treated exacerbations and inflammation cause further damage to the lungs and airways. I live with the bronch boggart but I don’t let it control me. I am concerned about you being breathless to a point of panic because this kind of breathlessness, is not, in my experience, part of daily life with bronch and even when I have an exacerbation, when I can be ‘ short of breath’, it is more the extra mucus to get rid of and complete exhaustion which gets to me.
I developed dilated cardiomyopathy four years ago and then I knew what scary breathlessness was! Thankfully now controlled with drugs but troublesom when walking up hills.
Do you have another lung condition alongside the bronch? Or are you in fact not having the proper treatment to get on top of whichever bug is currently in your lungs? I am not a doctor so can’t diagnose. I can only speak from my experience. Maybe there are other bronchs on here who live with permanent breathlessness who can share their experience with you.
Sorry littkepom, didnt mean to give the immpression that I get breathless alot, I just sometimes dont get enough air into my lungs when breathing in and then panic easy. I have just been for a heart scan as it turns out I have an enlarged ventricle, which my doctor said could be connected to this Be, so am waiting the results from that, this could be causing me some breathlessness.
That is very interesting. I have an enlarged and floppy left ventricle which came on over a period of two years. It is called left ventricular dilated cardiomyopathy. Before they finally listened to me and I saw a heart specialist all of my docs kept telling me that I wasn’t managing my bronch properly ( after 57 years?). The breathlessness was awful. Much worse than anything I ever had from my bronch.
My heart doctor thinks that it was caused by a virus I had in 2011 but nobody is sure. Some think that the chest problems bring on these heart conditions but I am not so sure as I have had several bronch pals who have lived into their eighties and never had any heart problems with it. I hope that the heart folk can get to the bottom of it and that if you get treatment for your heart your breathlessness won’t be so bad.
Once again littlepom thank you for this info, it is all starting to add up, it helps to understand the picture as a whole, ie that it isnt just the bronch thats causing the breathlessness and like you say once it is under control things will get better. I have a cold at the moment which isnt helping and the next appointment for the doctor is the 11th Jan ha! luckily I am ok.
Hi Lizzie, ‘boggart’ is my jokey word for the problems that we with lung problems battle against. Particularly those of us with bronchiectasis. A boggart is a type of little evil spirit monster in some fairy stories. Sometimes I call it the gunk monster. Having lived with these problems all of my life I feel the need to make light of it sometimes.
This is sadly a story we hear all too often of people being mis or undiagnosed for ofren many years, probably because until recently bronchiectasis has been a very neglected area of medicine.
I absolutely hate to see people with bronchiectasis being short changed.
You don't say if you have a furthr appointment with your consultant, nor do you say if your respiratory consultant has a special interest in cf/non cf bronchiectasis. You should be seeing one. If you let us know of a large city you have access to, we migt be able to help you find a consultant.
According to the British Thoracic Guidelines a sputum sample should be sent to the lab, whilst waiting for the results an antibiotic should be commenced and then reviewed once the results are back with the bateriam grown and the drug it is sensitive to. Page i5.
It is true that antibiotics do not help with a virus but for many people with bronchiectasis, including me, a virus invariably turns into a secondary chest infection.
Mucodyne does nothing for me but I am glad it works for you. There are alternatives i.e. nebulising hypertonic saline eithr 3%, 6% or 7% but it would be your consultant not your gp who would decide if s/he thought it would be benefitcial for you and you would have to have an assessment of the first dose. Thereafter your gp can prescribe.
I have put up a link for you of the most up to date inforamtion on bronchiectasis, along with ERS guidelines. It has basic informaton right up to videos initially meant for clinician to clinican. I was lucky enough to be part of the Patient Advisory Group, although I have had to give it up due to ill health.
Personally I have had bronchiectasis since the start of the Nathional Health Service 1948 and have never known life without it. Those of us who have had it from early childhoodbabyhood muddled through for many years. It is good that today we have the internet and can support each other. There is at last some very proactive consultants within the respiratory field and at long last research specifically for bronchiectasis.
You have to be proactive, especially within the community to get the best treatment and support from your clinicians. Please don't let them fob you off - the ideal is you can work as a team.
Good luck Irene and please let us know how you get on.
Hi coughdrop, how rotten for you having this for so long, I cant imagine the problems you must have gone through, just to get treatment for something the doctors probably didnt know anything about. Thank you for the links, I will read up as much as I can. I dont have any appointments and nobody has mentioned any follow ups and nobody has taken a sputem sample. This is where it gets confusing, not knowing what I should be doing.
Littlepom too has had BE since little and there are more of us unfortunately.
Yes it was pretty rotten having to be in hospital most of my childhood during times when tests and treatments were, and I know LP will back me up here, were barbaric, if well intentioned. The lack of education was the thing I feel resentful about.
Actually I had the good fortune to have an exceptional paediatrician, although he didn't specialise in respiratory he diagnosed me with BE following double pneumonia and whooping cough at the age of 5 months and looked after me until I was 15. Unfortunately he then referred me to a surgeon, the result being a lobectomy, even though my BE was diffuse.
Sorry I digress. This post is about you.
You really do need to find a resp con with a special interest in BE. It doesn't really look like things will change with your present docs until you do.
Hi cofdrop, so sorry to hear you had such a horrid time, it must have been awful and hey this site is for everybody, nice to know there are kindred spirits out there. Will keep you all posted .
Here is a link - you are in a good place for treatment. Check out the individual consultants to see who you would like to see. Hopefully your last con will have discharged you 'cos that makes it easier. If not 'phone or email the cosultant of your choice. Don't 'slag off' another doc, just say you have noticed they specialise in the condition you have and ask if they would consider seeing you as a patient. They will probably say yes and ask you to ask your gp to refer. You can then tell your GP the con has already agreed to you being referred. Job done.
Hello from another Irene (not too many of us about).
You've been given some great advice here and I'd like to add my tuppenceworth, being a lifelong (67 years) bronch sufferer.
Like you I totally changed my diet cutting out all sugar, and not eating any processed food - quite difficult actually but I'd say worth it.
Can't stress enough how important it is to clear the lungs of yuck on a regular basis. Since retiring and doing this daily, the benefit is enormous. I find nebulising a saline solution helps me but there are lots of different methods which can help.
Try to keep your immune system as healthy as possible to avoid an exacerbation and if you do need a course of antibiotics then please take a good probiotic to replace the good gut bacteria.
Exercise regularly if you can to give your lungs a good workout.
Hope some of this has been of help. Best of luck 😊
Hi Irene, i changed my diet mainly due to rheumatoid but must admit that since I have been retired I really do enjoy cooking, sk do everything from scratch. I do have my naughty moments and I take a regular kefir or live yogurt to help my gut health. I am finding it difficult to clear my lungs but know its important so keeo trying.
Update - collected my prescription this morning and found to my amazement it included mucodyne, after speaking to the surgery, the advice I was given by reception was incorrect, thank goodness it was just a mistake. I will still visit the doctors after Christmas as I think after reading from this site that it is necessary to have a regular visit to a specialist.
i. also have symptons like yours.my doctor gave me symbacourt.it has steroids and med.to replace yr muscle in your lungs.have to pick it up at pharmacy today.doc never gave me antibiotics for chest cold neither.....usually steriods
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