I know it's probably a question I should know the answer to but as I'm reasonably new to this I'm not sure? I've been on holiday and about three days before I've returned started with the usual achy legs and back that I get before my symptoms increase and now the cough is bad and the mucus has increased. Today I've got a pain in my chest going through to my back but I'm not sure whether to just try and ride it out or if it's always going to be an infection that needs antibiotics? I've not been able to keep up with my normal exercise on holiday and stupidly I miscounted my mucodyne tablets so not had the right dose of them either so I'm thinking if I now put these things right will it sort itself?
Thanks for your help in advance 😊
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Knicho
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It means it got worse than before or if you were not coughing and say now you are or weren't short of breath and now you are kinda like that
If your symptoms are that of the same before you get bad ...any increase in mucus cough feeling rubbish is a cert for antibiotics from your rescue pack ...dont hold off you may get worse than you really want to xxxx
So what I don't understand then is what treatment are you given? Last winter I was given loads of antibiotics but I never felt they made things better so wonder if they weren't infections? Basically I'm confused!
The first hospital admission which was the worse one, I had four Salbutamol nebs via oxygen 2/4 LPM, and three steroid injections, two at the same time. It took twenty minutes after arriving in hospital to get my breathing back to normal.
After was the usual test, ABG ecg and x-rays, followed by three days Acute Medical Unit, treatment there was Salbutamol nebs three time a day.
If you are aware and catch it in time you can increase the use of Ventolin and start taking you home pack steroid tablets, which I have used occasionally.
Thank you I'm only on fostair but I have got salbutamol which my consultant gave me to use if need be so I'll try that.. unfortunately I have no rescue pack which means I'll probably end up at the gp again! Thanks for clarifying 😊
Did you know you can raise your dosage of Fostair? It's wonderful in that way. Since being on it I rarely use ventolin.
Do go to your doctor, I'd say take an emergency appointment, you can't mess about if it IS an infection - perhaps you were given rubbish antibiotics last winter, ie Amoxicillin. Often you'd need a further course to sort you out.
You've come to the right place, you'll learn lots here to improve your lot. Many of us take a mucus sample to GPs to get analysed for correct antibiotic.
All the best. P
I have bronchiectasis, not COPD so can only say that any increase in mucus, change in colour and chest pain signifies an exacerbation consisting of an infection. It really isn't too wise to try to ride out any infection without antibiotics. It just gives the bugs chance to have a party and make the infection worse and more deep routed. If I was you I would take Angie's advice as she has COPD and is well versed in the different types of exacerbation that you get with it. I hope you feel better soon.
I'm not sure what I have as I still don't have a firm diagnosis! I've been told everything from pulmonary fibrosis to bronchiectasis to emphysema! Basically no one seems sure! However I agree that I should probably not leave it as I don't want it to get any worse!
Have you seen a consultant who also specialises in bronchiectasis and have you had a ct scan as part of your diagnosis? If not, given your ongoing symptoms I think that it would be a good idea to find a bronch specialist in your area and insist that your GP refers you. They are usually based at big teaching hospitals. Unfortunately, like GPs, many general respiratory consultants do not know much about bronchiectasis and can misdiagnose it as something else.
You need a proper diagnosis of the condition that you have. Only then will you be able to get the right treatment, your GP will be told which treatment to give you and you will be able to manage whichever condition you have.
A bronch specialist would also be able to diagnose any different cobdition which you have.My main relationship is with my consultant not my GP. I use my GP as a conduit to get the drugs which my consultant recommends when I consider that I need them. My GPs are very cooperative.
You are right I do need a diagnosis and yes I've had a ct scan after which the respiratory consultant tried to refer me to a scar specialist as I have scarring in my lungs from previous radiotherapy 14 years ago.. he then referred me back saying my symptoms could not be to do with the scarring as it was longstanding.. since then I've had an echocardiogram and been referred to a cardiologist as apparently I have a leaky valve and reduced heart function? Meanwhile I'm waiting for an appt in sept with a new respiratory consultant as the old one was a locum who has now left! I'm going to try and get an appt with my gp tomorrow and I will ask to be referred to a bronchiectasis specialist as I'm 99% sure that's what I have!
how complicated it gets. At least hopefully this thread has helped you sort out in your mind the way that you need to go. The thing is, you haven't had a proper diagnosis yet and until you do it will be impossible to get the appropriate treatment or manage your condition. You need both to lead a full life.
Good luck with the consultants and do let us know how you go on. We are all here for you.
I agree with this advice there is alot of confusion over the right treatment find a consultant who is willing to keep up todate with any new treatment and is willing to get the scans and blood tests you need once you have a definite diagnosis you know what your dealing with so you can take control good luck
I too have bronchiectasis. I don't know of any exacerbations for us that are not infections; can some bronchX patient explain if there are such? Interested to learn; this is not a confrontation/challenge!
I do not rush to antibiotics (or in my case extra antibiotics, since I'm on 3x weekly prophylactic Azithromycin) at the first sign of infection. I count the 'flags' of an infection and normally I need at least 4 different ones consistently appearing before I start to take xtra antibis. The only exceptions would be if I got very heavy recurring fevers or significant chest pain (but I would probably go for an X-Ray first in the latter case).
I get 3-5 infections a year currently, of which only 1-2 will get worse and develop to a stage requiring xtra meds. No hospitalisations for 2 years and even then the last one (of 3 in my 4 years of diagnosed bronch-X ) happened because I ran my fever deliberately too long to try to get an antibi-free period for sputum testing; now I have accepted that my samples will never tell anything useful!
Maybe it is safer to take early and I certainly would not take issue with you littlepom, but I like the confidence that seeing my immune system can still kick in confers.
Personal choice and no exact science. It's often a daily toss-up whether to open the meds cabinet wider when an infection is in early stages or mid-stream, but I have learnt to judge the tipping point by waiting to see how I feel the next morning (I'm often a bit $hitty for a short while in the evening or during the night, but back to ok in the morning). I might also take the extra meds a bit more readily if I know I have a special event/holiday coming up.
Flags:
Sputum colour (in itself needs a bit of personal interpretation as to colour!)
Sputum volume
Fever/ temperature control issues (including cold sweats and sensitivity to heat and coolness)
Fatigue
Headaches beyond light ones
Significant increase in coughing
Significant increase in wheezing
How comfortable I feel exercising
Sleep interference/bad dreams
Flu-like aches
[Might have missed some - I don't have this written down but this replicates (without checking) a post I made a year or so ago on another more-focussed/populated Bronch-X patient website (which gained no naysayers)]
Maybe don't follow my regime without testing it with your pulmonologist or immunologist. My immunologist simply said "I think you know yourself well enough, and now you know this condition well enough, to make your own calls"
Many Thanks this is great information! I have woken up feeling slightly better but still might head for the Drs to get a rescue pack if nothing else! If nothing else it has confirmed to me that I do have bronch as my symptoms are exactly what you describe when an exacerbation is starting!
hi santisuk. I think that we are mildly at risk in this thread of a confusion arising between what exacerbations are to those with COPD and what they are to bronchs. As knicho hasn't had a proper diagnosis she doesn't know what she is dealing with yet and so is getting two sets of opinions.
As a bronch, an exacerbation to me is basically thicker darker and more sputum accompanied to a greater or lesser degree with the other symptoms you describe except that I never wheeze because I have no element of asthma.
By reading the posts of COPD people I have deduced ( and I am happy to be corrected if I am wrong) that they can have two different kinds of exacerbations which many of them describe as flare ups.
One seems to occur when their breathing is made more difficult by an outside agent - smoke, perfume, cleaning products or the onset of a virus. Or when their breathing deteriorates because they need an adjustment of their inhalers.
The other is when they get coloured sputum very much like ours, maybe a fever, feel horrible and need an antibiotic.
I took azith for 6 years with cipro occasionally but it lost its effectiveness. I also developed AF which can be caused by azith but they failed to tell me. So I haven't taken it since 2013.
I do think that with all conditions the following is vital
get a proper diagnosis however much badgering that takes
learn as much as possible about whichever condition it is, from places like this or sites like NHS choices NOT Dr Google.
forge a good relationship with the consultant and a cooperation between them and the GP
learn what is needed to manage the condition on a daily basis and do it.
Get to now your own body and what it is telling you. There are many experienced people on here with different conditions who seem to manage better because they have learned to do just that. You very much included.
Sorry about the long post but it is to add to your very helpful observations and help everybody who is interested.
Experts have told me that, yes, absolutely we can have non-infection exacerbations. Also, I've been taught that these non-infection ones need treating with steroids and increased ventolin (since then I've been put on Fostair which is licenced to use differently so I rarely need ventolin). I've small airways disease & asthma. X
Hi I have been newly diagnosed with bronchiectasis only and do not know alot about it, what defines an exacerbation? Is it always an infection or can it also be anxiety that causes it like COPD?
Hi heatt and welcome. I will pm you later because your little question will actually need quite a long answer. Bronchiectasis is very complex in its origins and how it behaves. Also all bronchs are different. Look in your messages later and when I have time to sit down I will answer you.😊
Oh dear I am sorry Knicho.. not what you want on holiday. Don't know if I can be of any help really other than to say I always found it so hard to know if I was infected or not, and still do, if I need antibiotics. Usual medical advice is.. do you feel more unwell, more phlegm , has colour changed? That sounds as if it's then easy to know but for me it's not . However, I got some break through on this when I started taking photos of my phlegm ( yuk I know but we are all "phlegm people " on here!), showed it to a respiratory nurse who was amazed. I'd taken the 1st photo months ago and the colour , thickness etc had remained the same. Realised from her seeing photo I'd been infected for months. That's why when asked ..is the phlegm worse, do you feel worse, ? ...I couldn't tell, thought it was normal. So then I thought , well, I will always know now when I am infected! It's still not that simple though as I often feel tired, my consultant has the view of not going to antibiotics until you're sure, even sputum samples he says are only a guide for which antibiotics you need and you tell by how you feel! Seems so hard to know!!
But... I actually had a good spell recently and it's ... I think??!! ... made me realise that I shouldn't take risks at all. If I don't feel well and there's any doubt with phlegm then take antibiotics.
I felt my consultant thought I was in danger of taking antibiotics too soon and when I asked him if it's possible to fight off an infection yourself.. he said it is. However, when I showed him photos of when I'd been unsure what to do , he agreed the phlegm look infected.
If there is a summary to all this!...guess it is you have to know your own body, maybe log photos of phlegm of how it looked when you were infected and took antibiotics and how it looked when you felt well. Having said that no doubt I'll be mailing here soon about .. do I take antibiotics?
Maybe this long rambling answer may be slightly helpful in some way?!
Thank you and yes you're answer is helpful! The phlegm has changed colour its darker and thicker however I've also only been taking two mucodyne a day instead of four as I miscalculated what I needed for my holiday so initially put this down to that! Although I should have taken note of the aches and pains too! I think I need to start a diary of symptoms really however as I'd been well for a few weeks I'd started to get complacent!
Glad it was of some help. I wonder if it's abit different with COPD which I know you've not got. Littlepom who replied to you, who I know is an expert on bronchiectasis, more than me as she's had it for a very long time, said to take antibiotics. I'd agree as I'm fairly sure from my past mistakes that thicker darker phlegm will mean an infection especially as you started to feel ill. To repeat, maybe exacerbations are different with COPD, but with your symptoms and bronchiectasis, it sounds like an infection. Have you handed in a sputum test to check you will be taking the best antibiotic? Good luck and hope you can enjoy the summer soon! Xxx
Thanks I think you are right.. no I've not handed in a sputum sample as I've not been to Drs yet I only got back from holiday today at lunchtime so I'm going to have to go to the GP in the morning I think..x
fab reply winter. You summed up the dilemmas so well and I love the idea of the photos. So much better than the crayon drawn strips from white to greeny grey with phosphorescent lime in the middle that my clinic use to judge it!
Thank you. It's a long journey learning about it and often through bitter experience. You've given me good advice previously which I've valued and am sure it's good advice to Knicho. I've forgotten now but is it you ( or "still standing") who works with consultants in hospitals to help junior doctors diagnose bronchiectasis? Xx
You've got a good memory. I was ss but left when vashti died because I was so distressed. Came back with a new fluffy persona! I don't work with the consultants but have been coerced as a patient many times for the exams of student docs at all levels from first year to attempting to become consultants. It's very interesting but can be scary to realise that in their basic training they are only really taught about COPD in any depth. It is only if they happen to then work with a bronch specialist in the hospital that they begin to learn about it, and more importantly, recognise it. And of course there are all of those other lung condions which are even more neglected.
It's not surprising that GPs seem so ill informed!. My previous GP said I was obsessed with my lungs, bronchiectasis was like COPD just some inflammation . She then said my fatigue was as I'd got ME and referred me for that. The consultant I saw who saw ME patients was amazed that no one had told me bronchiectasis makes you tired and put the supposed ME symptoms down to bronchiectasis. Then when I did see a respiratory consultant he said " you've not got ME."Needless to say I changed GP. The new one is not especially knowledgeable but at least he takes it all seriously. So I'm not really surprised by your experience of trainee doctors!! Xx
My doctors have not given me a rescue pack either, and to be honest i think some people rush and take them when not needed. I avoid the doctors at all cost unless i really have to go.
Like stone-UK has said it is very possible to have an exacerbation through a trigger event without an infection. They can happen very quickly too, I had one on a bus returning from a CT Scan. A young girl gets on, reeking from some perfumed product, sits behind me, 10 mins later I'm gasping for breath and paramedics are called and whisked off back to the hospital with my blood pressure through the roof and sats down to 88% which were back up to 94% by the time I arrived there and all back to normal by the time I was seen by a doctor and discharged again after 3 hours.
Thank you I hadn't even realised this was possible! Again I think I need to take note of my triggers more through a diary.. I know one is spray on deodorant I can't stand the stuff leaves me gasping for breath!
Rule of thumb I've been told by my respiratory team to know whether to take antibiotics is if two of the following three things are happening:
- increase of mucus
- change of colour to green etc
- feeling unwell which can obviously include being more breathless
This has worked as a perfect guideline for me since Ive known it. Sometimes Ive just been more breathless (having an asthma component) without infection and have started a week's prednisolone which has dealt with that.
You really do need a rescue pack Knicho, and a care plan which helps you understand how and when to use it.
Thank you I agree! All those three things are happening so I guess I need antibiotics!
Hi the criteria I use is if your breathing worsens over a period of time and your inhalers aren't curing it, then you probably just have an exacerbation and taking steroids only should help. If you have coloured phelgm as well then it is probably an infection and you might need ab's and steroids as well.
If your phelgm is clear but you feel ill too then it is probably a chest infection and again ab's and steroids will be needed. If you are not sure it's best to take both or see a doctor.
You have had some great advice from very experienced bronchs. I am fortunate with my consultant (though I have not seen her for quite a while now I can phone her secretary for an appointment if I need to see her) and my GPs are very supportive. I have had a rescue pack for years now but the GPs want to see me as soon as something kicks off so that they can listen to my chest etc and assess what course of action to take.. Nearly always the advice is to start taking the antibiotics straight away, sometimes as a measure to prevent any stray bugs getting a hold. Sometimes I need steroids too but try to avoid them if possible.
I was told for the hundredth time by a respiratory nurse that you can have a non-infected exasperation so Mum only takes steroids when her sputem doesn't show signs of infection; that is it isnt green but just white. She has disposable cardboard bowls like in hospital to clear the sputum into which she was not keen to do but does now if she is on her own or just me is there.
Need doctor to check out if infection or not but my docs will not give antibiotics/steroids unless phlegm coloured or lungs really bad so no emergency pills supplied. Mucodyn needs to be kept up otherwise phlegm can build up I am on 1x3 daily when a build up of phlegm 2x3 daily which helps to break down the hard phlegm.
I am off my antibiotics and stirods 3/weeks now feeling a good bit better drinking plenty of water. But my face and eyes have got very dry using plenty of moisturiser any advice
Sooo I went to the GP and I he says I have an infection and a wheeze! So I've got antibiotics and steroids again! Thank you all for your help don't know what I'd do without this forum x
If you have a viral infection then then the antibiotics won't work.
If you have brochiectasis the you will need at least 14 days of abs to clear an infection and even then it may be back within 2 weeks.
If you have not started improving after 5 days you are on the wrong abs, this is why a sputum test is important before starting the abs.
If you havn't got a diagnosis then it will all be much more difficult.
Keep a diary, see the doc, take the tablets, note the symptoms and how they change. If you have a sample tested note the bugs (if any) reported for future reference. Not all infected bronchiectasis samples come back positive and that will often mean a return trip to the doc a fortnight later when you start deteriorating again. Sigh. Best wishes.
Thank you I will do.. he said he'd tried to cover all bases with two weeks of antibiotics and a week of steroids with a run down.. he said bronch infection needs ab and pulmonary fibrosis steroids.. will start a diary today and keep note! Last time couple of times though I've done sputum samples they have come back clear? X
I know exactly how you feel. It is confusing. On my repeat prescriptions I have antibiotics and they say 'for exacerbations', so I've always assumed an exacerbation means an infection.
Keep as busy and as active as you can /think of others I have an ex colleague who had a benign brain tumour when she was 26.. since then over the last 20 years she has had eight removed gone blind in one eye. She was the kindest happy soul anyone could meet .I am lucky COPD ,so I get out of breath and frightening when o have an infection,menieres disease off balance all of the time manage with a stick.. Prostate cancer for 12 years om watch and wait but I know who i would sooner be .
I can only speak for myself but I have COPD Emphysema and Rheumatoid Arthritis so I take lots of tablets, when I feel unwell (as I am now with increased dark mucus and bad wheezing) I start my rescue pack, My Dr knows that I know my body and is happy for me to start them when needed but I usually need two weeks to clear it. Tomorrow I'm going to make an appointment to see him because I am really rattling although I've upped my nebuliser and oxygen. It's trial and error always I hope all the replies help you in some way.
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