Bronchiectasis flare up need help and advice please. Just cannot sleep for coughing and despite having tablets to thin the mucus I just cannot get enough up to help me. What is the answer please?
Bronchiectasis Flare Up: Bronchiectasis... - Lung Conditions C...
Bronchiectasis Flare Up
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gingermusic
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If you feel that you are producing a lot of thick mucus which is refusing to come up, you probably need an antibiotic. If you have a bronchiectasis specialist give their secretary a ring tomorrow. If not, ring your GP practice and insist on a telephone consultation with a GP who knows about bronch. They should have a record of the antibiotic recommended for you and should give it to you for two weeks. In fact, you should have a rescue pack of antibiotics at home anyway to take as soon as an exacerbation flares up. Don’t let them fob you off. There is always the outside chance that you have covid, depending on what type of cough you have so if you think that you may have been exposed, getting a test wouldn’t be a bad idea. Good luck
gingermusic in reply to
I have had a two week course of antibiotic plus steroids and they did nothing to help. Also had a sputum test sent in before the antibiotics started and that did not show anything either. It is just so annoying that I am unable to get more than a couple of hours sleep due to the coughing and wheeziness all the time. I can cope reasonably well during the day but night time is a different story. Thank you for replying. Ruth
I know exactly how you feel I’ve been suffering for three weeks with exactly the same thingDoctor has now referred me for a CT scan and to the breathing clinic
in reply to gingermusic
I wonder what antibiotic it was? Sputum samples from bronchiectasis often don't grow anything because the bugs are so deeply embedded in the lungs and the sample takes a long time to get to the lab usually. I have doxycycline as my rescue antibiotic but if two weeks of this don't work then it's ciprofloxacine because I once grew pseudomonas, and this, so far, always works. Cross fingers. Last year I had 4 exacerbations, no growth in the sputum, only partial success with doxycycline but finally resolved with ciprofloxacin.
gingermusic in reply to
My rescue pack is also Doxycycline which to be honest never seems to help me as far as I am concerned. When they see it hasn't I am then put on Clarythmycine or something like that last time for two weeks but here we are again not a great deal better. They said because the sputum test came back clear there was no point in more antibiotic so maybe I just need to wait for it to get really worse and then they will do something. Ruth
Hi gigermusic. Cheriebobo here littlepom gave me some good advice a few weeks ago. I have been diagnosed bronchiectasis with ct scan have been coughing blood and tissue for mths sent for 2nd scan because 1st also showed shadow in lung. Littlepom told me to ask for 5 day culture of sputum as mine always came back clear. 5 day one showed puesonomas. Have been given citro and it helped within a few days. Usually i have amoxy as rescue but it hadn't worked this time. In march i was given coamoxacil which helped at the time. But citro working for me and thankfully bleeding has stopped as well. Ive asked for citro to be added to my rescue pack. And was. Given 2 wks. But dr told me it can cause C. DIF. Thankfully only had a day of diarohea as a side effect. But i think that the 5 day culture was a big help to find out the bug that was there. Maybe u should get dr to do 5 day culure instead of the usual 3 day one. Found it amazing that i usually send in full pot and showed 0. Then just a tiny sample this time with 5 day culture showed the puesonomas. Good luck. Yo get good advice on this site. Xx
Wow now that is truly amazing thank you so much for this and glad it worked so well for you. Ruth
I think you meant to say cipro (a shortened form of the word for the antibiotic ciprofloxacin), not citro, Cheriebobo?
Ciprofloxacin is the recommended 'first-line' defence antibiotic if pseudomonas is present in the sputum - per the British Thoracic Society Guidelines. 500mg twice daily or 750mg twice daily in severe infections. A 14 day treatment period is recommended.
If that doesn't work then you should be seeing a bronchiectasis specialist as the second-line defences are either intravenous antibiotics or combinations of antibis (and I doubt that the average GP would have the experience for this).
If patients get exacerbations 3 or more times a year they should be seeing a bronchiectasis specialist and asking her/him to consider whether a longer term prophylactic dose of azithromycin might be appropriate. Worked like a charm for me in the days when I was in that regular infection category - and I still take my thrice a week dose. I had been treating my exacerbations with amoxicillin/clavulanic acid (or levafloxacin if the pneumonia bug was suspected).
My sputum rarely identifies a bug on the standard 2-day incubation*, so I had to work off experience (using the last antibi that worked, which had been amoxycillin, then doxycycline along the journey towards eventually amoxy-clav) and consultation with a generic lung doctor in Thailand (where I live) who was good at spotting potential pnuemonia from X-Ray/stethoscope listening.
My Papworth Hospital bronchiectasis specialist in the UK (where I undertake an annual review, COVID travel restrictions permitting) recommended azithromycin 4 years ago and that reduced my exacerbations down to 1-2 a year and added that if I was still struggling with sputum sampling I should ask for a 5 day deep-dive incubation. When I did that 3 years ago back home in Thailand it came up with a trace of pseudomonas. By the time I got the result that infection was over (amoxy-clav) but when a more resistant bug appeared 18 months ago I took ciprofloxacin and that eventually cleared up a stubborn infection. I have been exacerbation-free since.
*My bronchiectasis specialist says that 'a few patients are like that, we don't know why'
Hi cheriebobo here. Wrote a long post in reply but lost the whole thing. My fingers are losing so connection with keyboard is that's why the mispelling lol. I have written it down info to show Dr as I do not have bronch spe ialist here in Scotland. Thanks for the help Erin's
Thanks for your reply very helpful
Hi , i can also relate to constantly being giving doxycycline i have just finished a 2wks course and they never feel like i get any relief im still coughing up thick mucus which sometimes is difficult to bring up, i have c.o.p.d , asthma and being tested for bronchiectasis. I get nausea and vomiting and itchiness. I dnt have good health care regarding my copd, i was diagnosed 7yrs ago and have only had 1 yearly check up due to the facted it hadnt flagged up of the gp system, so im still unsure of what stage it is at.and that was last December.
Thank you for replying I hope you get sorted really soon. I am now taking Clarithromycin 500mg so see if they help so far on day two and still wheezing so much I find it hard to sleep. Hopefully will see an improvement in another couple of days.
Keep drinking plenty of water, speak with you doctor on Monday, sounds very much like you could have a chest infection which will need treatment asap.
If you get in real difficulty before Monday, access the 111 service
nhs.uk/using-the-nhs/nhs-se...
you can complete the online form and take it from there.
Drinking water does not seem to be much help a hot cup of tea seems to loosen it better than anything, but I can only drink so much during the day or be on the toilet all the time. I have already had a two week course of antibiotic and a sputum test which showed nothing. I just want some sleep but thank you for replying. Ruth
Communication with your GP about the coughing sleep problems seems to be your only way forward then.
Yes I think you may be right thank you
in reply to gingermusic
I agree with Bkin on your next step then.
gingermusic in reply to
Thank you, Ruth
I totally agree water doesnt help with mucus but hot tea does it for me. I have COPD and take Carbosisteine or also know as Mucodyne, this sorts the mucus out. Breaks it up. Good luck xxSheila 💕
Funny you should say that as I find I always shift more mucus after a nice hot cup of tea. I also take Carbosisteine but never feel it does much to help Nay thanks Ruth
I increase dosage and works. Even taken 4 tablets at a time xxSheila
I currently take 2 in the morning and two in the evening maybe I need more
It was a friend of my daughter who works as a critical care nurse and she advised me when I had a flare up to take the extra Mucidyne. Either 3 or 4 instead of 2. I dont take this dose all the time but it sure sorted it for me when I had this thick mucus in my throat. It caused me to have panic attacks as hard to breathe. Worth a try as wont do any harm as when I told my doctor he agreed if it works do it. Lol 🤣🙌💕xxSheila
Ok well that is certainly worth asking about I was thinking of taking an extra two maybe at mid-day which might help. Thank you, Ruth
I have a prescription for 6 carbocisteine a day taking 2, 3 times a day, I rarely take that much, I am at the moment because I'm shielding so not getting as much exercise, if you are in a position to do some walking that will help loosen and clear your lungs of mucus, but if not, as has already been said try some extra carbocisteine, I hope you're feeling better soon.
Thank you that sounds like good advice. Ruth
I'm new to diagnosis still experimenting but find Twinings Spiced ginger tea really good-I add clear honey too.Camomile and honey tea at night helps me sleep. x
Thank you glad you have something that helps
Do u do the acive cycle of breathing to help get it up? May b u r getting it up,and rattlings due to asthma inflammation etc.u have to empty lungs using acb and postural drainage or whatever technique works 4u,at least x2 a day.im mid flareup too,its v v hard.use yr puffers more too
Hello no if I am totally honest I have found this the hardest thing ever to get my head around. I have decided to make a more determined effort with it as of today though so there is hope for me keep everything crossed for me. Ruth
I'm wondering if Sjogrens has got anything to do with it. It makes for a lack of saliva, and thick mucus ....my daughter has been diagnosed with it, as well as Lupus. I can't help but think that there is some connection, as I have EDAC which is the same thing as Bronchiasasis (they don't call it that in Australia). Yes, try and drink as much water as you can, and maybe get a humidifier. Even an asthma puffer could help...good luck, Judi
No I do not have the symptoms for Sjogrens but thank you
Hi, I have sjogrens and bronchiectasis I am always clearing my throat. Don’t know whether the mucous is coming from my throat or chest. I didn’t know sjogrens causes thick mucous. How is your daughter affected?
I think you will find Bronchiectasis and EDAC are not the same :
I had a similar problem, as soon as I lie down I start coughing, so now I sleep propped up in a semi sitting position. I know several people with lung problems who do the same. Takes a bit of getting used to but now I can sleep all night
Hi and thanks for replying. I have tried to use extra pillows to prop myself up but find that once asleep, assuming I am not comfortable I tend to skip down in the bed and off the pillows so not a viable solution, but thank you. Ruth
Hi I know the problem, I have adjustable back rest to support the pillows I still slid down and wake myself up but normally only once a night. A lot of fellow suffers have hospital beds, so the back can be raised but the foot also can be raised which I suspect would stop the sliding. Electric beds are pricy but I think the hospice could help supply me with a hospital bed.
I cannot go down the route of trying to borrow a hospital bed as with my partner in a double bed and we do not have room for further bed anywhere. I may have to looking buying an adjustable back rest though I am sure I bought one before which I could not get on with and sold it on again. Wish I could afford an adjustable bed which would be a great help I think, Thanks for the advice, Ruth
Put a cushion from the setee at the bottom of the bed it will help you stay more upright in bed. Give it a go to see if it helps. Good luck jct1x
My sofa does not have cushions I could use but thank you, Ruth
Hi I'm new diagnosis Bronch and told to put bricks or blocks under top bed legs to raise it.I have CoAmoxacyllin and a Shaker classic to loosen mucus.
I also buy Bentley mucus max I take at bedtime and after breakfast-Gualfenesin loosens. I find Twinings Spiced ginger tea with added honey lovely anytime.
Hope you feel better soon.
Thank you that's most kind
I'm not a medic, but it seems to me that you need a stronger antibiotic. Some bugs are very hard to shift.
I really think that as the sputum came back clear and showing no infection the idea of any further antibiotic was dismissed yet I have read of people with the same problem who are on long term antibiotics for many weeks, so I just don't known what the answer is. Ruth
in reply to gingermusic
With bronch the sputum test often comes back clear when there is obviously causing the problem . This because they only test for a few bacteria and don't give long enough for anything else to 'cook'. You need a different antibiotic.
gingermusic in reply to
That is interesting and I had no idea this could happen, Cannot believe my Pulmonary team are not aware of this. I will try and get a phone appointment with my GP tomorrow and see what she thinks and if she can advise me further. Ruth
in reply to gingermusic
Oh yes it happens a lot. This is why you need a bronchiectasis specialist. Unfortunately as I said before, GPs know nothing of bronch and most consultants in hospital respiratory teams know very little more. They just aren’t trained and don’t see enough bronch patients. They tend to treat it like copd and it is very different.You need to check f there is a specialist in your team is an expert in bronch.
gingermusic in reply to
Thank you for all your advice I shall have to ask about how qualified my consultant is.
in reply to gingermusic
They are all qualified. They just don’t all have the expertise in bronch. We have to seek them out. x
gingermusic in reply to
I shall see what I can find out about mine
Hi again 😀 I looked up NICE guidance nice.org.uk for Bronchiectasis where you can find the treatment yr GP should be giving you.For me UK I have Coamoxycillin 2 wks or more. Guidance also says patient should have supply at home for flare ups.
I followed the link you gave for NICE but found nothing for rbonchectasis found it a very confusing site to be honest,
Hi Ruth, I've had sputum tests come back clear. The bug must have been hiding. A second test has confirmed its presence. Good luck when you see your doctor.
Will have to see if I can get an appointment with the GP even if only a phone one though I have a feeling she may well tell me to go through my Pulmonary team. Thanks for the advice, Ruth
I would be talking to the GP again and asking for another sputum test as things have not got better in the abs you’ve been on.
I think that will be my next step but hank you for your advice
Yes to everything that has been said. As a reliever, I can recommend Lidl lemon and ginger tea (no milk). This seems to help and be better than ordinary tea or water. Also sleep with some strong menthol sweets. Halls do a good one and here in Malta you can purchase menthol sweets from Lidl. I keep them beside my bed and take one as soon as the mucus starts and when I go to bed. They do help
Sucking any sort of sweet makes the coughing worse but thank you
Ive found Strepsils calm down bedtime coughing
I will have a look at the Strepsils once able to get out to the shops again
Could the Dr give you a nebulizer to do saline water. That helps loosen the sticky sputum. Do you have a helpful Respiratory nurse ?
I do have a nebuliser and saline solution but was advised against using it
You seem to be so much like me although I have COPD . I hate the nebuliser makes me worse. Refused to use it. Makes my heart rate go up also. I suppose what suits one doesnt suit another. Trial and error is the answer. .Good luck xxSheila 🙌💕
Hi Sheila I also have COPD due to Emphysema for some 30 years but then this Bronchiectasis was found during a CT scan a couple of years back. It was done due to me continuously coughing at that time.
That's It I was diagnosed 10yrs,ago already severe then . xxSheila
Yes we are similar indeed, I wish you well. Are you on oxygen therapy? I am 24/7 now. Ruth
No not yet. I manage ok but everything at a slower pace. I dont know when anyone goes on oxygen its never been mentioned to me. Keep safe xxSheila 💕
Not everybody needs it so you are lucky.
Well I get really out of breath somedays worse than others. I think maybe if I could have oxygen to use when I get an attack. I know whenever I have called an ambulance the first thing they do is give me oxygen .sorts me out quickly. I know they wont give it to me as knowing me I would overdo it lol 😤😤😤😤 xxSheila
Have to say I could not move without it. Ruth
Do use it - use the saline after sabutamol x2 a day.it helps loosen mucous
Ok thank you
Why were you advised not to use it? It's normally effective and safe. Cliff
You need a different antibiotic. Do contact your GP or hospital doctor. What you are going through is horrid. How often do you have flare ups? I hope you get better soon. Good luck!
Fortunately my flare ups are normally only one or two in a year but this one is pretty relentless, but thank you for replying
That’s good, but there are things the doctors can do.
U do well to only have 1or2 flareups a year.personally,id increase use of puffers,use saline neb x2 a day to help get mucous up.if sputum discolours,get in contact with dr.trouble i find is,its a long hard slog frm infection/ flare up starting to settling down - usually by thn im starting again.take care x
Thank you x
I have been suffering the same as you, my consultant has given me a nebulizer, definitely helping bring more junk up. I wonder why you were told not to use yours. Hope you get it sorted soon x
I was told by my Pulmonary Nurse that he does not like the nebuliser being used as it adds water to the lungs, whether that is true or not I have no idea we just put our lives in their hands assuming they know best, Ruth
I've only had mine just over a week, but I have been able to clear my lungs more, which was a hugh problem for me. I hope you manage to get some relief x x
Thank you that is very kind. Ruth
Hi...I often struggle with mucous stuck in lungs. I'm on azithromycin 3x weekly(for 9yrs).Helps with infections but not relieving the mucous.Doctor gave me Diazepam for use now & again as he said its important I get sleep. It works well, even half a tablet. Good luck! X
That is interesting thank you for your reply. Ruth
Hi I have bronchiectasis also and have recently changed to nacsys 600mg from carbocysteine it has helped enormously, I drink plenty of fluid in the day and clearance techniques every morning with an acapella device, also sleep slightly elevated and it keeps mucus buildup down. 2yrs ago I was on constant antibiotics and steroid pills nothing showed up on samples either. I hope you feel better soon and get some answer.
Hello and thanks for your reply. I have recently bought an Airfare delivery which works in the same way as the Acapello I believe. It is certainly helping me breathe if nothing else at the moment. Ruth
I also take N-AC (acetylcisteine), rather than carbocisteine for my sputum relief. To be honest I self-trialed both over a monthly revolving 6 month period a few years ago and found no difference in sputum thinning capability. I chose N-AC in spite of its higher cost* because a one-shot pleasant effervescent drink is much more convenient than multi-dose daily tablets and the claims for extra benefits from N-AC as a food supplement (and recently, perhaps as a drug**) just might have some veracity.
Also I discovered yesterday when I did a review of the timing and with/without food status of all my drugs (I'm a bypass recovery bod and osteoarthritic, so I have a real fistful of meds!) that N-AC is best taken on an empty stomach, so maybe I should repeat my self-trails again!!??
[Out of interest, can my fellow (but resident) Brits get N-AC cost free if they qualify for free prescriptions under NHS guidelines? I'm guessing that its treated as a food supplement and again guessing that food supplements are not prescribed by NHS doctors)]
*I'm a Brit expat living in Thailand, so I don't get free drugs. In Thailand a course of 1x 600mg dissolving tablet per day N-AC costs me the equivalent of 50p (US 40 cents) per day, which is 50% more expensive than the (steady state) dose of 375mg 4 times per day carbocisteine tablets.
** I noted a few days ago that there has been a recent uptick in claims of benefits for N-AC - and more in the nature of pharmaceutical effects than the traditional food supplement claims - see for instance:
Have you got a flutter valve, this is good for helping to shift mucus, its worth trying I am on azthromycin also which I take 3 times a week. Has really helped . I hardly cough at all and keeps infections at bay.
Thank you, I have purchased the Airfare which is similar. Ruth
Why I told you I was using an Airfare I have no idea as it is the AeroSure which does help with my breathing
I think you need to see your gp or contact whichever specialist is looking after you. Warm drinks get absorbed more quickly, so keep those fluids up to help thin your mucus. I have saline nebs to assist with clearance, but I find that taking my ventolin first helps to open the airways in preparation. I don’t know if your on nebs or not, but if not, maybe a steam inhalation bath might be of benefit (just water). As mentioned, getting a sputum sample to grow anything is quite difficult if the bugs are low in the lungs, but a change of antibiotics may do the trick. Good luck
Make sure you check it is not actually reflux causing you cough..reflux is what actually caused my bronchiectasis and started as a wheeze and a cough at night until I felt was actually chokingThe reflux didn't get diagnosed with me straight away as I don't get heartburn ,it is silent reflux.
Try gaviscon ADVANCE,l and maybe some nexium tablets for a few weeks
One of the Pulmonary nurses in my team has just put me on Omeprazole twice daily and Gaviscon before bedtime not sure that it is helping much at the moment and been on it a week now. I was just told to get Gaviscon nothing about Advance though. Thanks Ruth
That's what I was told is the best for reflux.ask the doc if can make sure that is on prescription
The Omeprazole was on prescription but not the Gaviscon
I get the gaviscon ADVANCE on prescription too
Oh wow you are lucky, so does my daughter but our surgery prefer not to prescribe what you can buy yourself so looks as if I have to miss out on that one. Just my luck, Ruth
Omeprazole takes a couple of weeks to reach optimum. I take it everyday it really helps with cough.
That is good to know I shall persevere then
I was also coughing because of my Brochiectasis very time I went to bed. Could it be the temperature drop from a warm lounge into a cold bedroom? Maybe not.
Take one or two puffs of an inhaler. Ask the Doctor if it will be Salbutamol or Ipratropium bromide or something else. An inhaler might do the trick. Hope you get some satisfaction.
I think temperature does play a big part as I cough like mad whenever the gas central heating is on. Really annoying as I need to be warm but seems I cannot be warm without coughing and gasping for breath
It does sound like you need antibiotic. Consult your doctor and get a supply of antibiotic and steroid to keep at home.
I have a rescue pack here at home but I am not starting it as I have only been a week since finishing a two week course which did not help me.
Hi gingermusic, I have been having the same problems. I have had 2 lots of antibiotics and steroids and they have helped a little but not shifted the problem. My mucus sample and chest x ray came back clear and I have been left to my own devices for a week. I will need to call my gp tomorrow as I am still sob. I make up my own honey, lemon and ginger drink and take this when my coughing is bad, I can drink this hot or cold and it does help. I have some little posts filled with water that I hang on the radiators to help put moisture back in the air. I also use a facial steamer to help with the wheeziness then use the blue inhaler which helps to clear my chest. I do hope you have spoken to your gp and got some more ab's x
Oh gosh yes it seems we are both in the same boat doesn't it? Stupidly I did not phone the GP this morning as I slept much better last night and did not have a coughing problem, but as the day has gone on things have got worse again so I feel I did not act in a good way. That will teach me to not be so optimistic won't it? Still always tomorrow
Ha! Isnt that always the way, same reason I have left it a week. I have put myself on some probiotics to try and get my tum right and didnt rewlly want to go back onto ab's but looks like I will have to. As you say there is always tomorrow x
I did contact my GP yesterday the result being she wants to send in another sample of mucus for testing and she is going to start me on an AB I have not tried before so shall see if this new one has any effect.
Thats good news, i hope this new ab works for you. I am afraid I overslept yesterday and again today. If you dont phone at 8am you cant speak with the doctor, will need to set my alarm ha! But am feeling a little better today so I may see how I feel in the morning x
Thank you, wishing you all the best with getting through to the GP if you need to. Ruth
So many excellent recommendations here. The night coughing really needs to be cured since sleep is so important to health. I concur with the idea of too much liquid in the lungs (via nebulizers) being a problem. It will cause more coughing if there is too much. One idea is to use half the amount (less liquid) and always follow with lung clearing procedures. I find huffing to be most effective after puffer, saline neb and airfare type device. When lung secretions are thinned too much, there will be more stimulus to cough. If the coughing is wheezy, steroid inhaler is helpful but not immediate. What you're aiming for is your own regimen of the right amount of treatment to produce an efficient sputum removal and less coughing. For the extra resistant sticky stuff-- hot lemon juice and honey tea works great for me. Another idea I read here is a sleep aid. Some type of safe cough suppressant for nighttime might be what you need. Just be sure to do your pulmonary clearing procedures first thing in the morning. Just some add-on ideas. Hope something here might be helpful.
Thank you this is very helpful and I shall certainly ask for a longer culture next time they want to send in a sputum sample.
New sputum sample going in today hopefully for a longer test and then an AB I have not had before will be delivered to me today so fingers crossed, Ruth
Saw specialist about my severe brochiectasis. Apart from the other medication I am taking he suggested I use a Sterimar Nasal Spray. It helps, but the internet says only use it for seven days. I'm confused. Anyone use this spray which is safer than steroids. Cliff.
Is thistle same one you can buy without prescription? If so I can find nothing that says you should only use for 7 days everything I have read makes it sound as if daily use if fine
Sterimar nasal spray, according to the internet should be used only for 7 days.The instructions on the box do not give any give any instructions about the length of time. Cliff
Debs_ALUKPartnerBritish Lung Foundation
Hi Gingermusic
We have some great information on our website on bronchiectasis and I have added the link below for you. You can also ring our lovely nurses for advice. You can call on 03000 030 555 and we can arrange a call-back if you would like. Do speak to your GP or nurse if you are still struggling with symptoms as you may need further treatment.
blf.org.uk/support-for-you/...
Take care
Debs
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