Nebulisers and Bronchiectasis

[stillmovin]

Hi there. I have seen some past posts on using nebulisers but as yet, I am a bit confused! The consultant arranged for the hospital respiratory nurse to lend me a nebuliser this week as I am having longterm probs getting mucus to shift from down in my lungs. She showed me how to use it and gave the vials (MucoClear 3%) and I have been using it for two days, once in the morning and once in the evening. I know it may be early days yet but does a nebuliser actually get mucus up and when? So far, I have just been getting a very runny nose when I use it. There is no coughing up mucus or any movement of the mucus from deep down whatsoever. Do I need to give this all some time? The nurse mentioned that it is a saline medication and acts in a way similar to the Salt Caves which are springing up all over the UK (and charging a bundle too!) but when do you actually start getting up the the hard-to-shift mucus from the lungs? (I have also been through lots of other devices such as a PAP, a flutter, a salt pipe, chest physio exercises, mucodyne tablets, the lot..)

stillmovin

[Louisiana]

I have found the Flutter helps a lot and things have been a bit better since I have taken Carbocisteine...helps thin the mucus. Good luck

[stillmovin in reply to Louisiana]

Thanks Louisiana, I have not had much luck with either of those but I am keen to hear if I should expect good results with using the nebuliser after a while or if I should be getting results right now after using it only two days.

xx

[Louisiana in reply to stillmovin]

Good luck

[Suzannejames in reply to stillmovin]

I was the same when I was using saline in my nebuliser, but since I have been using not sure what it's called but I know it's 5 mg. ten minutes later I cough all the nasty stuff up. It's like breathing fresh air. Hope you manage to sort it, as it makes you feel as if your suffocating if you can't bring the mucous up. I really feel for you and hope you get it sorted.

[stillmovin in reply to Suzannejames]

Thanks Suzanne's could you find out what you use and let me know? Thanks xx

[Suzannejames in reply to stillmovin]

Hello it's Nebules Sallbutamol surfate 5mg.

[sassy59]

Pete uses his nebuliser twice a day and mucoclear too. He likes it because it does help him cough stuff up whereas he struggled before. Hope you get results soon. Xxxxx

[stillmovin]

Thanks sassy. I think I ought to keep trying with it although I can't help feeling it is just hitting the upper respiratory bits (like putting your head over a steaming bowl of olbas oil when you have a cold in your head). I don't want to give it up just yet but starting to get disappointed that it hasn't had an immediate effect xx

[Hidden]

I wait about 20 mins after nebulising h/saline, before starting my physio. But I am using 7% solution. My consultant (at RBH) said 3% hasn't been shown to help much in bronchiectasis, so if you can tolerate it they prescribe 7%. I use salbutamol beforehand as 7% does make me a bit wheezy, though I've got more used to it now & it soon goes off. It definitely helps shift the stuff from way down in my lungs, in fact I don't know how I'd manage without it.

[stillmovin in reply to Hidden]

thanks Hanne I think they were just trying to get me used to it by starting at 3%, however, my consultant did mention that he was going to refer me to RBH for a consultation. I will be seeing my local consultant again in 6 mths but I think the RBH might be a good opportunity to have another opinion before that and to see if I would like to continue my treatment up there in future.

[Hidden in reply to stillmovin]

Definitely go to RBH if you get the chance, & never let them go! Apart from seeing experts in the field, you get the benefit of all the research they do.

I had a challenge test for the 7% and just scraped in within an acceptable level of tolerance, but my lungs hardly react at all now Plus you can nebulise it through an I-neb, easy peasy

[stillmovin in reply to Hidden]

What's an ineb Hanne? Sounds very interesting. I will see if I get the referral to RBH as I'm still under my local consultant but yes, I've heard v good reports about them. Just dont know how I'd get there from Crayford. Xx

[Hidden in reply to stillmovin]

I live about 2hrs' drive away. They have bookable disabled spaces if you need one. Or, if you can't get there any other way, they'll arrange hospital transport. You will still be seen regularly at your own hospital, but RBH will conduct tests, decide your treatment & advise the local consultant accordingly. Then you'll have regular follow-ups at RBH. I'm on six-monthly ones at the moment but if I'm not well they see me more often, & liaise as necessary with my consultant locally. It works very well.

I can't remember if you're colonised by pseudomonas & are taking colomycin? If so, you can get an I-neb on loan from Philips Respironics, if you go on their "Promixin" brand of colomycin. Ask your consultant to arrange it. It's a vibrating mesh nebuliser, very fast, light & portable. You can neb salbutamol and h/saline through it too, it massively reduces the time spent nebulising.

[Smizzle in reply to stillmovin]

Hello I'm new , what is RBH.

[stillmovin in reply to Smizzle]

Hi RBH is Royal Brompton and Harefield Hospital in Chelsea London. Great hospital for respiratory illnesses and you can ask your present consultant to refer you there for a second opinion. X

[tbeth]

I use a flutter after nebulising and a vest while nebulising. Along with physio, this combination helps me get the mucus up. Hope this helps.

[stillmovin in reply to tbeth]

Thanks teeth it seems we have to do a heck of a lot to shift this mucus! When I was first diagnosed I thought it was a simple case of two sets of forced expiration huffing and puffing breathing exercises a day. Now after 6 years, seems it involves a lot more effort and commitment than that! Take care xx

[stillmovin]

it's so exhausting isn't it! I can't get used to it after so many years! I get tired in the morning as nothing ever comes up then and I am so tired by the afternoon, I get fed up huffing and breathing that I know I should be doing it the whole day in order to get anything up. As soon as it comes up, it is back again! This is bronchiectasis, I suppose!

[Shirleyj in reply to stillmovin]

Feeling the same as you at moment, have asthma and bronchiectasis, as soon as I clear my lungs, it just comes back. Hope the nebulizer works for you. I use the flutter and huffing, but it is exhausting. Good luck with your clearance. X

[stillmovin in reply to Shirleyj]

Thanks Shirleyj I gave up on the flutter but perhaps I'm not giving these things enough time to work. I read about people having great results from them and then I think I should be having instant results and get disappointed. I just find it takes so much out of me and nothing happens! The huffing exercises are perhaps the best but they are effective sometimes and other times they just don't seem to produce anything. The physio

[stillmovin in reply to stillmovin]

Sorry I'm having trouble with this iPad! The hosp physio gave me a little device called a PAP once which you blow into but didn't do a thing for me! It looked so promising at the beginning! Sigh! Take care xx

[bayleyray-uk]

Hi Stillmovin,

Have been nebulising saline 7% for four years now at the beginning I seemed

[stillmovin in reply to bayleyray-uk]

Shame you couldn't get this reply to come through Sue, it looked as if it was interesting! Xx

[bayleyray-uk]

Hi STillmovin,

I did try to send you a reply twice yesterday evening and as you can see only one was partially successful. So I shall just say persevere it does take a bit of getting used to.

Take care.

Sue

[stillmovin in reply to bayleyray-uk]

Thanks for replying Sue. I'm having nosebleeds with this nebuliser but I have those easily anyway so I'm not going to stress about that. I suppose I have to keep going but I just wish I could get rid of this tightness in my airways. Feels like only part of my lung is open. Take care xx

[sagittar]

I have the thick mucus problem myself. Can anyone tell me if there mucus is yellowish in color. Specially in the morning....

[stillmovin in reply to sagittar]

Sagittar my mucus has NEVER been a clear neutral colour and it has always been almost green, when I'm not having an infection! With an infection, it darkens. I asked the consultant why it is always green and he said everyone has their own colour of mucus and it is when it changes from that to a darker colour is a sign of exacerbation. I don't worry about it being green anymore, as long as it doesn't darken to a brownish tint. Nor should you, I would say.

[tubelloabril in reply to sagittar]

Hi! Long time. Do you still have yellow sputum? Im like you, Id like to know what did you do that time. Thanks.

[Sohara]

I actually went to a talk last night at the Brompton on Bronchectasis, and the consultant there said THE MOST IMPORTANT thing for us to do is to keep our lungs as free from mucus as we can. So its worth us all keeping going however difficult it is.

and boy is it difficult

But worth it....Sohara xx

[Hidden in reply to Sohara]

Hi Sohara. That sounds interesting, I didn't hear about it. Did they mention the research into the use of oligosaccharides for breaking down sputum? Developed from a type of seaweed I think! I know it was being trialled for CF but would of course be very relevant for us.

[Hidden in reply to Sohara]

I've found it Sohara and stillmovin algipharma.com/products/ Phase 2b trials due to report before the end of the year. Looks promising but a few years off yet, though the website says it has orphan drug status. I think RBH & Imperial are involved in the trials, it was my consultant there who mentioned it.

[Sohara]

That's interesting Hanne,,,no he didn't mention that, but he did mention several research programmes they would be running there VERY soon. one I was particularly interested in was an inhaler they will be testing that contains Tobramycin which is for Pseudomonas instead of nebulising , which would be brilliant for me, as nebulising colomycin takes so much time out of the day. They start recruiting suitable patients next year I think. My first appointment there has now been put back until January "sigh" but they said that will be in time to be registered with them for the trial....You will be on their books so they will contact you if you are suitable candidate for one of the trials. They have another couple of trials already full that are Bronch patients and he said the trial for Pulmaquin has finished all the trial stages , so hopefully that will be available for us soon as well

[Sohara]

Actually he did not say what the current trials were on so most probably the one you sent the link for is one of them

[Suzannejames]

Hi, hope I can be of assistance to you. My nebuliser says A C 2000. Also says HS Clement Clark International . I also try and stand as much as I can when using it.

[revchristinajoy]

I have asthma, bronchiectasis, COPD and Aspergillus allergy and find a saline nebule and ventolin nebule together (as prescribed for me) really helps to loosen mucus. If your chest is very tight, it may take a few days to notice the benefits as your tubes open up. Carbosysteine thins the mucus. If no benefits after 48 hours, get back in touch with your medic.

[stillmovin in reply to revchristinajoy]

Thanks for this reply. I am just today returning the nebuliser to the hospital as it didn't help me and in fact aggravated a weak blood vessel in my nose which meant I started to have my nosebleeds back. I think I will concentrate more on the chest physio exercises I was shown, as this method helps to release mucus. That, and getting more exercise ( when I can get back on my feet after a severe foot injury which has left me housebound for several weeks!) life is not simple, is it? Xx