I am newly diagnosed after a year of pink/brown sputum on occasions early in the morning,I was told it was a side effect of ramipril,Now it appears to be Bronchiectasis,
This week I have been given 5days of steroids,Amoxicillin for 14 days and Carbocisteine 4 a day indefinitely,
I am at a loss as to how to progress as only seen my G.P.
I have no action plan or appointment follow up.
Any advice would be welcome.
🙏Mary
Welcome to the forum Mary. I don’t know a lot about Bronchiectasis but do know you need a referral immediately to a bronch specialist. They are normally in the big hospitals l believe. Please insist your GP refer you as you will then get the very best treatment and support. Don’t take no for an answer.
Good luck to you. Xxx👍❤️
Not much Hope there but will see how I am at the end of the month??
I have forwarded them a photo of sputum since last October. so they do know. the colour.
It has just happened and this I do not understand.?
Thank you
could you contact the ALUK helpline …..they will be open tomorrow
Are you sayi g your gp has made this diagnosis??
yes I had seen spoken to several at the practice and had a X-ray in February which I was told was normal . They said the respiratory team had said it was the Ramipril but I saw no one.
A locum GP I saw said it was as soon as I saw him two weeks ago. No mention of ongoing care at all so far. Just case closed.
do notaccept case closed.
make a formal complaint about the gp closing the matter and also make a written request for a referral to a specialist. Unfortunately more often than not you have to force the issue to get some action
If I make a formal complaint then I will have to change practices. I have been there about 45 yrs so know the majority and I did make a verbal complaint to the dr who told me.
but have not followed it up as have felt too ill.
U need a ct scan to confirm diagnosis of bronchiectasis.have u put a sample( of sputum) in for path lab to test? Ths ensures yr on correct antibiotics.I hope yr meds soon work and yr feeling better soon too.if whn antibiotics are nr completion,and yr not well,get a specimen pot frm reception+ get an appointment with dr x
Hi
I have bronchiectasis too. As far as I’m aware this can’t be taken just from chest x-ray. You need referral to a chest physician. If you ask to be referred then they should refer you.
In the mean time either GP can order the CT or wait for the resp specialist to organise.
Sending a sputum off if a good idea.
Don’t be afraid of asking the GP for a referral, I do this if I feel the need. These days they are more willing to refer on.
X
Good morning Manicrose. I do hope the medication helps you and you get help with answers from friends on this forum. All I can say is that I know we are all different. But I was on Ramapril for 15 years and had no reactions like you have had. Hope you feel better soon. Brian
thank you The only problem I had was blood stained spurn early in the morning,Nothing else. I took it last thing at night so I would not know if my BP was low. I am now on Losartan.
Apparently I was told this can occur whereas was perhaps the start of Bronchiectasis.
Who knows. I feel so much better from the support on here,
Yes we all try to support each other being as we all have similar conditions I think we understand more even though we are all at different stages of mobility.. Hope today goes well. Brian
have a look on the British Lung foundation web site. Quite a lot about Bronchiectasis. I agree you need a CT scan to confirm diagnosis. Hope this helps
Good morning Mary. I have bronchiectasis and have had for most of my life, I’m 75 now! Please get a referral to a consultant to ensure you have a proper diagnosis, medication and action plan. There are respiratory specialist nurses who work alongside consultants and doctors who are invaluable. A sputum test will show what infection you have, if any, so the correct antibiotic can be prescribed. Best of luck.
Hi Mary, welcome to the forum. I agree completely with previous contributors regarding CT scan and sputum analysis. I would also add that it would be a good idea to have physiotherapy to learn to expectorate and clear your lungs properly. The name of the game is to avoid flare ups / infections. If you can’t be referred, there are numerous resources and videos online.
Keep well and take care !
I have bronchiectasis. I would really push for a CT scan of your lungs. Don't take no for an answer. Only then, can a diagnosis of bronchiectasis be confirmed. Do take note of all contributors' suggestions so far. Good luck, and let us know how you get on.
Hi Mary,
I was in the same boat as you in May, I came home from the doctors and researched the hell out of the diagnosis.
It led me here and to Asthma and lung Uk who have loads of support and advice.
I had a ‘flare up’ and that has led to referral to a respiratory team in Warrington where I live. They are available 24/7 for support.
When first diagnosed I thought it would be a complete life changing diagnosis but managed well I am finding I am able to do ever as before but I am more aware and manage the symptoms well.
You should ask for a physio referral to help you breathing techniques and chest clearance exercises.
Hope this helps and please keep in touch if you want to ask anything else.
Good luck and stay well. X
Bronchiectasis is linked with RA as they are both autoimmune diseases and makes catching chest infections more likely. You need specialist care for diagnosis and treatment for sure. Good luck
The treatment prescribed by your GP would be a correct first step if you had confirmed Bronchiectasis. It should also be accompanied by a sputum test to ensure that Amoxycillin is the best antibiotic for whatever bug is affecting you this time.
However, as others have said, you need proper confirmation that bronchiectasis is the correct diagnosis, and for that you require a CT scan and a referral to a specialist.
Before my diagnosis, I was ill for months and had repeated treatments with antibiotics.
I became so unwell that I could hardly walk so I said to my GP that I wanted an urgent referral to a specialist. He wasn't taking me seriously until I said I wanted a private referral.
Best money I ever spent! My lovely consultant recognised that things had been left for too long. I told him I couldn't afford a CT scan privately so he transferred me to his NHS list and it was done pretty quickly. I have seen the same consultant regularly for the past 9 years!
I was referred for Pulmonary Rehab which was invaluable as, not only was there fab support from the Respiratory physios running it, but it enabled me to have an open referral to the Community Respiratory Team. Also, meeting others with lung conditions helped a lot.
The GP I have now is delighted that they are all involved as she says I am 'complicated' as I also have chronic asthma with fixed airways disease. The meds I am on can only be prescribed at consultant level, so, whilst happy to deal with emergency care, she would not dream of tampering with my regular care plan without getting the OK from my consultant or the Resp team.
I am currently better than I have been for years due to some changes to my meds at Christmas.
Do, please, insist on a referral to a specialist and also ask if you can be referred for pulmonary rehab.
I the meantime, look on YouTube for videos showing techniques for chest clearance as this is important. Look for ACBT (Active Cycle of Breathing Technique ).
I do hope you find this info helpful and soon get the right support.
Xx Moy
That’s so kind of you. I have had a catalogue of missed warning signs this year which are difficult to discuss yet you all are wonderful .
I went to my surgery with complaints of recurring chest infections about 5 weeks ago . They thought it may be pneumonia so was sent for xray then ct scan then I saw a specialist about 10 daysago and bronchiectasis was diagnosed, it all seemed to happen very quickly. She showed me my ct scan and went through it all, I have been out on carbocisteine and I have a follow up in 2/3 months. I've also got a respiratory physio coming to my house next week. So you definitely need a referral
Request a referral to a Respiratory Consultant. In all likelihood they’d organise an MRI scan. Have you provided a sputum sample to discover what the culture might show? I’ve bronchiectasis but have had a good 12 months past. I suspect GPs don’t come across bronchiectasis too much, so specialist intervention is a must.
First question, who diagnosed it as bronchiectasis? If GP then not reliable. You do need a ling specialist to give the correct diagnosis. My wife has had bronch for around 50 years but only in last 4 years have the specialist said bronch. Previous so-called specialist came up with asthma, COPD, long term effects of smoking and all the rest. Bronch really is on its own. Good luck and keep us informed. BTW usual long-term treatment is Azithromycin 3x per week. It is an antibiotic but also works as an anti-inflammatory. Chris.
thanks
You`re welcome, I forgot to add that my wife also has physio 3x per week to help keep her lungs clear.
We dont get this in england.we get cpl sessions to teach us and do it ourselves x
Physio is much more widely used and available in France. The physio has just left leaving wife to continue with exercises. Our grandson had a long and complicated op a month ago to remodel his jaws. Both jaws broken, bit chopped off end of chin, a week with mouth wired together so only on fluids, but now that wiring has been removed, physio 2x per week to get the muscles and nerves working again. Very good service but we do pay a lot more than in UK. NI contributions 22% in France, plus we pay £170 per month for top up insurance, even though we are retired.
I hope yr grandsons coping ok,must b v painful x
Don`t think he feels pain. he went into hospital at 7.00 am, the op lasted about 6 hours and he left hospital at 7.00 pm. apart from a couple of paracetamols the first 2-3 days, nothing else. This is the fourth major op that he has had having been born with bilateral hare lip and no palette. His skin heals amazingly quickly and the results are spectacular. Top marks to his Professor who spends his holidays in exotic places such as india, Africa and far east teaching local doctors how to do this sort of operation. They really do have a fantastic team in Toulouse.
I totally agree with all the previous comments. I too have bronchiectasis and was messed around by an incompetent surgery for 2or 3 years before they finally referred me. (I did not realise you could insist on a referral- something I learned on this forum.) The local hospital was very thorough and gave me a battery of tests to confirm the bronch and then to identify the bug which was lurking in my lungs. They put me on a course of pulmonary rehabilitation, which was brilliant. You need these things too to help you feel better and able to get on with life. It's hard to put your foot down when you feel rotten, but you do need a proper diagnosis. Have you got anyone who could come with you and ride shotgun? It helps, but many of us manage on our own. By the way welcome to the forum and I hope you will let us know how you get on.
Ask to be seen by a respiratory consultant. You need more investigation
thanks
Hi Mary welcome to the forum. I don’t know where you live but living in Gwent, Wales we don’t appear to have many bronch specislists. I have had problems since 2012 diagnosed in about 2017 with bronch under general respiratory clinic at St Woolas. I have now been told that I can call on a needs basis rather thsn having my 6 monthly check . I was told not to take steroids as it perpetuates the cycle of infection. But I have found carbo and azithromycin a game changer in terms of infection although I still cough a lot, an unfortunate consequence of bronch x I would go back to gp and ask to be referred to s specialist so that you can get the right care and support xx Good luck and sorry for the rambling reply xx Bridget
Welcome to the club - I was eventually diagnosed after 20 + years of being treated for asthmas. I am now on antibiotics Mon,Wed & Fri and Carbocystine 3 times a day. Touch wood - my chest is now fine ie I used to have 5+ grotty chest infections every year and (touch wood) have not had any for 2 years! Ask to see a respiratory physio for breathing exercises to clear your lungs every day.
Dear Mary,
Welcome to the forum.
First of all, do not worry. Bronchiectasis does not happen overnight. If it really is bronchiectasis you have probably dealt with it for many years already. Usually diagnosis is by CT , although some features may be picked up in a regular chest X-ray.
The description sounds like you need a decent dosis of antibiotics now, and some corticosteroids to feel better quickly, and your GP is the right person to prescribe it. For the longer term it would be good to get a referral to a lung specialist on the side (preferably a bronchiectasis specialist) and continue with your GP for day to day and very acute stuff, including the occasional antibiotics, Prednisone (oral or injections) or even oxygen.
Not all hospitals are large enough to have a bronchiectasis specialist. It depends very much on where you live. My hospital does not, and the pulmonologists there take good care of me, but for urgent problems I always see the GP first.
Good luck
Thanks
Hi Mary, I have Bronchiectasis (diagnosed a few years ago) and recurring Aspergillosis. Coughed for years before I was sent to specialist! As others have said you'll need a CT scan for diagnosis. I'm on Carbocisteine (2 three times a day) but you need help to show you how to try to shift the mucus. A specialist should arrange that, mine did, and I have been given a device that also helps shift it. Think the conclusion is that it's all about having a Bronchiectasis specialist and self help (once you've been shown how). Also this site is a real life line, full of fun, friendship and support. I have learnt a lot from the lovely people on here. Good luck and take care 🙂xxx
Have you had a CT scan to diagnose your Bronchiectasis? Have you put a sputum sample into your GP surgery for testing to see if you have a chest infection? If your sputum is coming up pink, it could have blood in it. Your GP must refer you to a specialist in your local hospital.
I had bronchiectasis and apparently it had been lying dormant since I was five years old. It raised it's ugly head when i was 54 and it wasn't something that could be controlled. After a chest xray which showed up considerable abnormalities I was referred to a specialist and after a year of tests of various kinds I had to have one of the lobes in my left lung removed. They all thought i had lung cancer but after examination the diagnosis was bronchiectasis. It cured me but left me with emphysema which has progressively got worse over the last 19 years. ........Do go and get your doctor to request a chest xray as a starting point. I wish you the best in your journey.
There's a great UK bronchiectasis on Facebook, with very knowledgeable people if that's a help. I suppose you know about the clearance technique?.
Hi - sorry to hear that. I have had the bronch for about 15 years now (part of my COPD diagnosis) but it is very hard for a GP to diagnose so I would ask first (and insist) for referral to a specialist for a second opinion.
You also need to get a sputum sample off for testing - he has prescribed antibiotics but if you have no infect these will be of no value. The Carbocistein is designed to turn sticky mucus to runny so you can more easily expectorate it.
The pinky colour sound like a little blood (from coughing?) and possibly ditto the browny tinge (stale blood).
The Ramipril is to lower blood pressure. I take it but have had no side effects; one of them is a dry cough (see below); coughing a lot can damage blood vessels.
So do please contact you GP, make sure he refers you to a specialist, get a sputum bottle from your surgery, t5ake a sample and get it tested.
If you are diagnosed with COPD here is the perfect place for some good advice.
Ramipril side effects:
A dry, tickly cough that does not get better. Cough medicines do not usually help for coughs caused by ramipril. ...
Feeling dizzy or lightheaded, especially when you stand up or sit up quickly. ...
Headaches. ...
Diarrhoea. ...
Being sick (vomiting) ...
A mild skin rash. ...
Blurred vision.
Most GPs don’t know anything about Bronchiectasis and some respiratory doctors don’t know a lot about it. You need to look at the respiratory docs at your nearest big hospital and find the name of one that specialises in Bronchiectasis. Phone one of the secretaries if needed. Take the name to your GP and insist on a referral. As others have said you need a ct scan for a diagnosis. You could be being treated for something you don’t have. If you have plenty of gunk to get rid of look up active cycle of breathing on YouTube to learn how to get rid of it. I know we all sound bossy on here but that’s because you’re being treated really badly. Good luck let us know how you get on. A call to the helpline may be helpful.
Hi Mary and welcome to the site. If you type in bronchiectasis in the search box you will find previous posts on this which will give you a wealth of information, looks like you already have had alot of replies with good information. I do hope thwt you feel better soon and can get a referral from your gp x
hi I have bronchiectasis which is diagnosed by having a scan not an x ray. I would say to get a scan booked in or a referral to a chest / bronchiectasis clinic. Take care xx
thank you
I am overwhelmed all the replies and comments I have received . So kind of you all.
I will now look at the support groups and helpline later today . So grateful.
You definitely need to be away from your GP and referred by him/her to a specialist.In one sense, try not to worry. The treatment for COPD and bronchiectasis is the same to a large extent.
After a long period of arguments with clinicians at all levels I was told something that explains everything.
Put 5 COPD clinicians in one room and you will get 8 answers.
In short, their are so many treatment regimes that it really is a matter of 'suck it and see'.
What works for one will not work for another.
You need a clinician somewhere who will listen to you and allow you to experiment.
The thing that I found most beneficial was to make contact with other sufferers either through things like pulmonary rehab or support groups.
Talking to others definitely opened my eyes and allowed me to challenge conventional wisdoms.
Good luck...
thanks
You have had goid advice from other members .I have asthma and bronchietasis. My respiratory nurse treated my asthma but I was having one infection after another over several years. Moved house so had a change of gp. The first thing he did was send a referral to a specialist. Got a Ct scan and was diagnosed with bronchietasis and then got the appropriate treatment. Have a yearly appointment with consultant but in general the respiratory nurse at the surgery supports me and if required contacts the consultant. Like most others have suggested you require a Ct scan to confirm the diagnosis. Good luck .
good morning Mary,
Always scary when you hear an illness/condition labelled.
I have lived with Bronch all my life..chronic (my maternal aunt was first in Australia to have part of her lung removed just after 2nd world war)…she lived to 80+ and raised 9 children!
I’m 73 and have other illnesses…
I say this for your encouragement.
Practically, you do need to get a referral to a respiratory specialist …you need a CAT scan as others have said Bronch doesn’t show on flat X-ray.
Physio and breath exercises…helpful. Keep trying to clear the yuk…steam…etc
Maybe long term antibiotics….
Most of all don’t give up…I was told “a healthy diet, a positive attitude and exercise “…you’ll do well. Also “you have to play with the cards you’ve dealt”….
At the moment no doubt you’re feeling lousy but be your own best friend and peruse advice and help.
Go well Mary ..kind regards Helen Australia 🇦🇺
How precisely was it diagnosed? I had a persistent cough after a cold, on and off for 37 years! I saw a new GP for an unrelated condition but asked about my cough. I said it occured after a cold . He referred me to Respiratory Cons. Many tests, after which I had a High Resolution CT scan of chest. Diagnosed with mild bronchiectasis as a result of whooping cough in 1983. I have rescue packs of Amoxcillin for flare-ups.
I have a hospital consultant and see him 3 to 6 months, I was referred to a pulmonary respiratory group. Pacing yourself is key and finding what cardio you can manage will help. x
thanks I can see what you mean. . I can feel the difference without steroids as my chest is getting ruttly..
What is air physio ?
ps my consultant also said to me its not always the colour that's important but to get rid of the sputum as frequently as possible and you can use an air physio to do that. x
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