Congestion

[PAP48]

I have Bronchiectasis and Asthma, over the past month or so I am continually congested with unpleasant mucus. I had a few days of, for me, severe asthma, which was sorted out with a short course of prednisolone. I just cannot seem to get rid of the congestion, keeping me awake at night and I am so tired. I had a sputum test done a month ago which was clear, allegedly. I am awaiting the results of one I put in on Monday as I am colonised with Pseudomonas. Any suggestions how to help the congestion? I take Azithromycin 3 x week, Spiriva and Relvar on a daily basis. I have Ventolin for asthma when required. I do have Carbocisteine which I am currently on a break from. Any ideas would be so greatly appreciated.

[poppyshola]

Hi PAP48, SAME I have had Bronchiectasis since I was 9/10, (61 years ago), severe rhinitis, Asthma, hayfever...

I'm also colonised with Pseudomonas A and sometimes Aspergillus. ..

For my blocked up nose I use Neilmed nasal rinse (can be obtained from Amazon) the kit contains the rinse bottle and little salt sachets tor about £12 plus my GP prescribed Dymista nasal spray ...which is very good ...

For Asthma the Ventolin disks and Seretide disks as the pump spray make me cough like hell...

For Bronchiectasis I have a Spiriva inhaler, I take 3 Carbocisteine a day and wouldn't be without them and as I can no longer tolerate oral antibiotics whenever I do need antibiotics for an infection I have IV antibiotics which I do at home provided by the Hospital.. I don't have a rescue antibiotic as my stomach can't tolerate them and my rescue was prednisolone which I admit are magic until you get hit with osteoporosis after a fall in your old age ... so I no longer have those to rely on ...

Something I will recommend in my own experience is good old BUTTERCUP SYRUP it's been on the shelves for many years but it's really good .. you can either take 1 or 2 teaspoons from the spoon or mix a little hot water with it ...

I

[PAP48 in reply to poppyshola]

Hi to you too poppyshola. Thank you so much for such a detailed reply. I'm like you too, I had whooping cough at 6 months and have had chest problems all my life, Bronchiectasis diagnosed in 1987 but I must have had it longer than that. I'm now 75! I, too, use Neilmed, brilliant for clearing the sinuses, I also have a steroid nasal spray to be used daily. With Carbocisteine, I find it loses it's effectiveness if I take it too long, thus while I am on a break, then when I start taking it again, it really works. My consultant advises the break from time to time. As far as antibiotics are concerned, as I said Azithromycin 3 x week but when I have a pseudo exacerbation, it's Colomycin which is inhaled through a nebuliser. I'm usually on that for between 3/4 months or sometimes longer. My rescue pack is prednisolone too, as Consultant doesn't want me to take any other antiobiotics and they do work for asthma, although thankfully, I don't often require them. Interesting about Buttercup Syrup, I do take cough medicines that contain guaifenesin but will give the Buttercup a go.

[Germantara]

It's awfull I have copd and constant sinusitis and post nasel drip I always as often in day use steam it's does help not cure but helps

[PAP48 in reply to Germantara]

Thank you for your reply germantara. Post nasal drip is awful and I do use steaming from time to time but I find the Neilmed system to be the most effective treatment. It is available at most chemists or Amazon. Take care.

[Patk1]

If Yr mucous is thicker,perhaps takryr carbocysteine.if its looking infected,it prob is,regardless of sputum test results - I watched a you tube video,specialist in bronchiectasis.he explained v well that " clear" result doesn't mean I don't have an infection,it shows there's no predominant bug and he said go by Yr symptoms.do u feel u need antibiotics? I'd ring gp

[PAP48 in reply to Patk1]

Thank you Patk1, I do take carbocisteine, I'm on a break from it at the moment. I find it works for a while then doesn't so I have a break and start again. I'm awaiting test result tomorrow, thankfully I have an amazing respiratory team who will speak to Consultant for advise. I agree that a 'clear' result isn't always correct. I take colomycin through neb for infection. Keep well.

[B0xermad]

I find I cannot go without the mucolyte medication without a big increase of sputum so I religiously do clearance techniques every day so it doesn't get a chance to become too much and go to my lungs getting clogged.I also drink 2litres of water a day plus hot drinks regularly

[PAP48 in reply to B0xermad]

Thank you B0xermad. Good point about drinking water, I don't think I drink nearly enough. I don't like plain water although I know it's good for me. Keep safe.

[Alberta56]

I found an AeroBika helped a lot when I was coughing up endless mucus. Your doc can prescribe one if he feels it will help. Otherwise I can only suggest that you try to keep moving as much as you can. Seated exercise is a great deal better than nothing.

[PAP48 in reply to Alberta56]

Thank you Alberta56, I do have an Aerobika which is invaluable for clearance. You're right about exercise, I know I don't do nearly enough! It's difficult when you are feeling 'off'! Take care.

[Alberta56 in reply to PAP48]

When I feel totally off, I tend to wriggle my feet and raise my legs as far as I feel like doing while sitting on the sofa. My husband would like one of those Revitalift things advertised on the telly, but I feel that is the lazy way to get things moving. (He does not have lung troubles.)

[Biker88]

Along with all the other tips, the flutter device (AreoBika) is a popular one along with nebulising with saline solution. A physio on my pulmonary rehab course suggested getting a 2 litre bottle full of water and blow into with straw this has a similar effect to a flutter device.

[PAP48 in reply to Biker88]

Hi Biker88, yep I use Aerobika and saline neb 3 times a day. I think I'm looking for a way to stop it happening in the first place but I guess Bronchiectasis causes the increase in sputum and there's not too much I can do about it happening, just deal with the symptoms. Keep safe.

[Biker88 in reply to PAP48]

I find I can no longer sleep laying flat otherwise I wake up coughing and spluttering, I have to sleep in a semi sitting position, took a bit of getting used too but now worth it for uninterrupted sleep

[PAP48 in reply to Biker88]

Yes I have a v pillow and 3 ordinary pillows on top. How do you stop yourself from slipping down?

[Biker88 in reply to PAP48]

I invested in an electric bed, so I can raise the legs up a bit which stops me slipping down, I know a few people who have manually adjustable hospital beds for the same reason

[lvn0619]

Sputum should always include mycobacterium and fungal testing for those of us with bronchiectasis. In addition, water should be boiled for 10 minutes to kill MAC and other bacteria before use for drinking or any other use. I use AerobiKa for my albuterol and 7% saline nebs twice daily and more often when congested. This part of my dairy routine. In conjunction with ACTs breathing techniques. I hope this information will benefit you.

[PAP48 in reply to lvn0619]

Thank you Ivn0619, very interesting info, hadn't thought about boiling water, although when I do drink water i's bottled. How do you use your Aerobika for albuterol? I do saline nebs 3 x per day. Keep well.

[lvn0619 in reply to PAP48]

I use the breath activated neb cups so I don’t loose much of medication. The cup attaches to smaller end of AerobiKa instead of attaching a mask etc. My neb cups/equipment are reusable and I rinse and wash after each use then boil them including the AerobiKa for 10 minutes. There is still bacteria in spring water as well. The group that I follow in addition to this boil drinking water for 10 minutes. If you can get on the web site for National Jewish Health hospital in Denver Colorado, they also have recommendation guidelines for bronchiectasis treatments. I learned that the steam from hot showers carry pseudomonas and MAC as well as other bacteria. Showers are quick and cooler for me. I set my water heater between 135 and 140 to kill MAC. Some people install 0.2 micron PAll filters in their shower heads. I’m looking into this as well. The Lung Matters” web site as a wealth of evidence based recommendations for people with bronchiectasis, MAC etc..

[PAP48 in reply to lvn0619]

Thank you Ivn0619, very useful info. Do you have a spacer for your meds? Is using the Aerobika better than a spacer in your view?

[lvn0619 in reply to PAP48]

Hi, I do not use a spacer for nebulizing my albuterol and 7% saline as I do it in conjunction with the AerobiKa. I haven’t used an albuterol medi dose inhaler but it is my understanding that a spacer is beneficial with the inhaler in that you waste less medication. I do have the inhaler in case of I need it while out. I should look into the spacer and have it available. Thanks.

[nottowell]

Hi i take nacsys in a drinks form with Spiriva as that helps thin the mucus

[PAP48 in reply to nottowell]

Thank you notowell, is that the tablets you put in water? I do take carbocisteine but not sure it actually does too much for me. Keep well.

[nottowell in reply to PAP48]

Yes it is not a cure but can help ,the one thing that does help is 5 mg of morphine i don't know why but reall y does help

[PAP48 in reply to nottowell]

Does your doctor prescribe the morphine? Not heard of that before but worth investigating. Thank you.

[nottowell in reply to PAP48]

Yes i have it on perscription it's 5 mg twice a day

[RaphaelIV]

I was prescribed Pulmozyme (generic - Dornase Alfa), which is taken in a nebulizer. Worked like a charm to break up the mucus. It's usually given to Cystic Fibrosis patients. Think of it as an enzyme - but it works at the DNA level. I'm in the USA.

[PAP48 in reply to RaphaelIV]

Thank you RaphaelIV, very interesting info. I have looked into Pulmozyme but I don't think it's available in the UK, sadly. I will mention it to my Consultant when I next see him. Keep well.

[Thumbalena]

Hi PAP48. The only thing that helps with my mucus is Carbocisteine, I take two tabs 3 times a day. My consultant sent me to a physio to learn how to move the mucus off my chest but to be honest it didn't work for me. The whole process to an age. I also tried a flutter decide but nothing could break up my chest full of mucus.I felt like I was drowning from the inside out. Started to take Carbocisteine and all is well at the moment.I used the nasal wash too. I does help although takes a bit of getting used to. My rescue pack is Doxycycline and prednisone but I haven't needed to use them for over a year.

[PAP48 in reply to Thumbalena]

Thank you Thumbalena, I do take Carbocisteine but if I take it for too long, I think it loses its effectiveness, so I have a break and start again. This too was suggested by my Consultant. Pulmonary Rehab is great for techniques, but I agree the whole process does take a long time. Because of being colonised with Pseudomonas I can't take any other antibiotics other than Colomycin which is inhaled through a nebuliser. Keep well.

[Numptybrain]

Hi Pap

It’s awful but be careful I’ve just had an in patient stay due to a nasty infection that went on for weeks, 3 lots of antibiotics didn’t kill it, eventually my lung consultant had me admitted. I do have fluid on both lungs and heart currently which doesn’t help but apparently that’s due to a autoimmune disease so I’m waiting to see a rheumatologist in November, but please be careful, it snook up on me so quickly and Covid is doing its rounds, a different strain apparently.

Take care

Wendy

[PAP48 in reply to Numptybrain]

Thank you Wendy, I'm so sorry to hear of your infections and hospitalisation. Hope you are feeling better now. I've read that Covid is about again, time to be cautious again. I do have a great respiratory team who will speak to me tomorrow and I'll go from there. Keep well.

[music]

Hi i was on ventolin inhaler and worked really good for me few puffs a day has got very wheezy has well has short of breath. I was diagnosed with COPD 2013 then a few years ago after yearly breathing test the nurse said that she thinks now it could be Asthma because i have been mild readings for so long and put me on a powder inhaler called RELVAR ellipta 92/22 once a day and OMG it is like a magic bullet has for nearly 3 years now i have had no problems wheezing at all walking in the wind and can walk much further and faster honest it now feels has nothing wrong with me at all with my breathing

Music

[PAP48 in reply to music]

Thank you Music, glad you seem to be getting on OK. I, too, have Relvar Elliptar and don't usually get bothered by asthma, just going through a bad patch and had to have steroids for a few days but am over that now. Just this awful congestion. I wondered if there was any magic cure to stop it happening at all, but just wishful thinking! Keep well.

[poppyshola]

Hi PAP48 ... its me again ... I forgot to mention I sometimes am blessed with Sterimar Congestion ease if my Pharmacy can source it .. its a more gentle nasal spray than Dymista nasal spray which is very effective but more blow your socks off type...

I also have a variety of other conditions one if which is IBS and other tummy related things ... and on my last visit to hospital the young quite newly appointed consultant insisted I shoud try taking probiitics, definitely before I go on a course of antibiotics to fight off the bad bugs ... he gave me a short list .... which included Activia yogurts with live cultures and Danone Actimel which also has those ... and I have to admit since earning them and taking them religiously my tummy is bloating and hurting much less than usual ... this helps me feel much better in myself too.. so I feel its definitely worth it if you can afford them ... with finances being so tight at the moment. And .. taking these every day often twice a day helped me tolerate Amoxycillin again which I started having problems taking...

You mentioned worrying about getting tinnitus ... I've has ear problems for years after my left eardrum burst due to school nurse syringing them when I was around 9 , I had constant ear infections with that too.. and developed tinnitus.. gad that fir years .. it got so bad it was like sitting in the middle of a factory full of noisy machines 😫 making it even harder to hear, making me rely on lip reading...

An absolute nightmare when mask wearing started ...

Due to the tinnitus a new nurse/Doctor saw me at our practice convinced I had an infection that she couldn't spot.. referred me to a private doctor that done the suction of the ears for trapped wax... it cost me £50 but that was the best £50 I ever spent, besides the £50 that I spent obtaining my medical records dating back to childhood ... so for anyone having to tolerate tinnitus should really try ear suction by a professional ... he found wax that I never had according to other Doctors..

I hope some of this info helps x🙂

[PAP48 in reply to poppyshola]

Thank you poppyshola, I think it was another member talking about tinnitus. I don't have any problem with my ears, thankfully. I do take a probiotic tablet every day, maybe that helps? I must look into the Sterimar congestion ease, not heard of that one. I just use the Neilmed sinus rinse system which does help a lot to get rid of the secretions in my sinuses. Very kind of you to give me so much information. Keep well.x

[Tdster43]

We have an interesting paper due in Asthma and Broncheiectasis. My personal experience of looking after quiet a lareg group of patients with both diagnoses is its tricky! Mostly the challenge is that are the symptoms due to the asthma the Bx or a bit of both. ABOS asthma bronchiectasis overlap syndrome is definitely common

The lung si incredibly clever but responds to being upset in only so many ways; cough, wheeze, sputum, breathless so there isnt a simple clinical indicator

Things that can be handy when in clinic is to get your FeNO test done (if its high may push more asthma treatment is needed), similarly if your blood counts hows very high eosinophil white cells it might push asthma and/or screening for ABPA

A few observations; hypertonic saline seems to work very well in ABOS (once the simpler things have been done)

Azithromycin is often started at 250mg once a day Mon/Wed/Fri- it can be pushed up if only a partial response to 500mg once a day Mon Wed Fridays or 250mg once a day most days (*check with your doctors of course)

the reason lower doses are used as they work in many and we think side effects are slightly more likely at higher doses. Bear in mind the higher doses as above were actually the ones used in the trials that showet azithromycn worked and the side effects were generally minor

If there are a few flare ups needing steroids then you may be eligible to be referred into "difficult asthma MDT"; quite a few of my patients have been revolutionised with asthma biologic injections

Look up Mepoluzimab/ Benraluzimab/ etc for more info- then ask at clinic

I think I (well my excellent nurse specailist team..) look after over 20 ABOS patients taking biologics and most are doing so much better

This sort of tells me the bronchiectasis was more of a minor player in many of the patients symptoms,, even in some who have has Pseudomonas for a while

keep well and active everyone

[PAP48 in reply to Tdster43]

So interesting to me as a long term bronchiectasis sufferer, probably caused by having whooping cough at 6 months. Only officially diagnosed by Royal Brompton in 1987. I do use saline nebs 3 x per day and take Azithromycin 3 x week, sometimes increased to 5 x week for exacerbations. Also Colomycin through neb for pseudomonas. I have just, today, received test result put in a week ago, Klebsiella and am awaiting Septrin antibiotic to treat. Asthma is the minor part of my condition, very rarely needing steroids in tablet form and also rarely needing to use salbutamol inhaler. I see your mention of your nurse specialist team, I have an excellent respiratory team of specialist nurses and physios, couldn't be without them. When will your paper be published? Many thanks for replying.

[Lilianne]

Hi PAP48, You seem to be a little in the wars at present. I do not have asthma but I do have brochiectasis which means that I too have a lot of green and yellow mucus to cough up. I did take Aziromycin but never felt entirely well. I find that if I empty my lungs in the morning but coughing up the mucus and then have a salt inhaler, this seems to work for a while. I too have sent in sputum tests which always come back negative, no further action. I believe that they do the smear tests on some manufactured medium rather than the original one, which could mean that the test results are not true!

I would keep up the carbocisteine as it does help bring up the mucus. I also find that Jakeman's lemon and honey throat sweets are good for helping with breathing. I also try to stay away from too much dairy and now have oat milk on cereals and in tea etc. Perhaps this could help you too. I am not a medic just a concerned sufferer. Hope you soon feel better. Lilianne. x

[PAP48 in reply to Lilianne]

Hi Lilianne, thank you so much for your reply. I do take Azithromycin 3 x week and tolerate it very well, and I use saline in a nebuliser. Interesting about the Jakeman's, I have a cupboard full and are my go to lozenge! We do seem to have a lot in common! I haven't tried changing from dairy to other sources, bit of a coward. My big news is a 'bug' has now been identified in my latest test. Klebsiella. My consultant has prescribed an antibiotic for me to collect tomorrow called Co-trimoxazole, not had that one before. For Pseudomonas I have Colomycin through a nebuliser. I'm sure I will feel a lot better when I've started on the antibiotic routine and am strangely relieved that something has been found and can be treated. My respiratory team are so good as is my Consultant and GP, can't ask for anything more. Thank you for your good wishes Lilianne, and I hope you keep safe and well. Penny x

[Lilianne in reply to PAP48]

Thank you Penny, hope you get really well following this new antibiotic. Keep safe. Lilianne x