Which is the most effective inhaler?

[Lynzilou]

I have pulmonary fibrosis, and have difficulty breathing because I am constantly coughing, trying to clear the mucus from my lungs. I have a salbutamol inhaler, but the small amount of relief it gives doesn';t seem to last very long. I have Codeine Linctus from my doctor, which I can take up to six times a day, but it doesn't seem to do anything to relieve my cough. I get really, really breathless and cough for twenty minutes with very little result. Any advice would be appreciated.

[andyrrc]

Not really sure if this would help but I always keep a pack of Fisherman Friends with me when I have a feeling I will start coughing. It doesn't do much more the mucus but it does tend to relieve the cough. I also have something for watering down the mucus to make it easier to shift (mine is called ACC but it is not available in the UK except for paracetamol overdose or so I was told by the chemist) Also sometimes get Mucinex . These both have some effect but for me they do not help with the nighttime cough.

[Lynzilou in reply to andyrrc]

Hi Thank you for your quick reply! Ive got Covonia sweets - which I would think are similar to Fishermans Friend - but I'll buy some FF tomorrow anyway. Where did you get your ACC if it;s not available in the UK - are you in the USA? I'll get some Mucinex tomorrow as well. x Cheers!

[mrsmummy in reply to Lynzilou]

Sucking the sweets may ease the cough but it will keep coming back until the mucus is expelled. In the UK it is usually Carbocisteine that is prescribed to thin mucus to make it easier to expel. It is a good idea to clear as much of it as possible before retiring to bed. There are how to videos on YouTube to show techniques.

[Lynzilou in reply to mrsmummy]

Ill see my gp for Carbocisteine. Its 4 am, and I have been coughing for over an hour - and hardly anythiing is coming up, and Im breathless . This is driving me nuts!

[andyrrc in reply to Lynzilou]

I live in the middle East at the moment so getting meds is fairly easy even without prescription. I see Mrsmummy has also replied with another option which may be better in the UK. I know that the mucus is a big problem if not shifted for me at night

[Hidden]

The number of long-action inhalers are endless..you need to find one that suits you.

Have you been referred to a specialist?

Here you have the British Thoracic Society guidelines for pulmonary fibrosis..

brit-thoracic.org.uk/standa...

Hope it helps x

Fran

[Hidden in reply to Hidden]

What I would say is that codeine represses cough so don’t mix it with a mucus expectorant like carbocystein or mucinex etc, it is dangerous and would lead to a chest infection. Get advice from your GP.

[Lynzilou in reply to Hidden]

Hi Fran, thank you for all your help. Yes, I was referred two years ago, but my pulmonary fibrosis has got a lot worse recently and I have developed this cough which is a real problem. I have stopped taking the codeine linctus, and am using carbosistine instead - on my gps advice.

[Hidden in reply to Lynzilou]

You’re welcome. Glad you found a solution xx

[corriena]

Inhalers are not usualy any help to Fibrosis suffers unfortunatly. Carbosistine is your best option but learning breathing teckneeks will help bring the mucus up the lung to a place whear cough will effectively remove the flem. Ask your dr or specilist. or look for square (counted) breathing and huffing. Breath out to a count of 4 in for a count of 3 repeat a few times then huff mouth open expell air as quicly as you can. this should help move the flem to the top of the lung were you can cough it up. Sorry im not to good at describing but hopefully this will give you an idear what you are looking for good luck i hope this helps

Ps sorry about the spelling

[Lynzilou in reply to corriena]

I got Carbosteien from the drs yesterday, and it does seem to have loosened it, but I still have a tight chest and when I breath out I want to cough, but when I cough, nothing comes up, I cough about twenty times before something comes up and by then I am completed drained and exhausted.. The huff method I find very difficult and not very successful.Have you heard about stem cell treatment to treat the cause of the problem at all.

Thanks for all your advice. x

[Lynzilou in reply to corriena]

Hello again. I have looked at the video and started to do the breathing technique, not very well, but even what I've done has been successful, thank you for that advice. I see it works, so I shall practice to get better. I've now got Carbosistine from the docs, and I have ordered the Flutter device today - that one, because its not so expensive as the Acapella.

Thank you so much for your advice.

[sarcoid1234]

I have a lung condition which is a form of pulmonary fibrosis and produce phlegm every day, but I do Active Cycle of Breathing technique (ACBT) each morning and at bedtime to cough it up and then I don't cough during the day. If I don't do ACBT at nighttime my lungs "rattle" and can't sleep. There is lots on the internet about Active Cycle of Breathing Technique (ACBT); this is a good site youtube.com/watch?v=XvorhwG...(Not working as expected?) I was taught by a physiotherapist to do it lying down on each side but it can be done sitting up.

You could buy a nebuliser which gives steam to loosen the mucus and make it easier to cough up. You could ask to see a physiotherapist who could test you with a nebuliser to see if you are suitable for 7% saline solution which helps loosen the mucus. Or you could put your head over a bowl of very hot water with a towel over your head to loosen the mucus which I used to do before I had my nebuliser. I also have a Flutter device which I bought which helps if the phlegm occasionally gets particularly stuck (Look on the internet to explain what this is). There is also a device called an Acapella which is similar. There is also the Aerosure which is similar but works on electricity and costs over £100!

I never go anywhere without a packet of Fisherman's Friend (includes menthol and eucalyptus), as if I do feel the urge to cough I suck one (a very strong taste so takes some getting use to) and the urge usually disappears.

One last thing. My phlegm is white, but I have been told that if it goes yellow or green that may mean I have an infection and I should ask my doctor's receptionist for a little pot, cough in to it (in private!) give it to the receptionist and the doctor will send it to the local hospital for analysis to know which is the best antibiotic to fight it. I hope this all helps.

[Lynzilou in reply to sarcoid1234]

Thanks for this. I've tried the hot water/steam thing before I go to bed, but it doesn't seem to work in the long term - seems great when I finish, but once I lie down I get the "rasping" in my lungs and have to cough, then I'm back to the coughing for about 25 minutes until just a little mucus comes up. I've looked at the Flutter now , and the Acapella, and the Lung Flute - do you know if they all do the same job? The Lung Flute is an American site, and therefore would be expensive. Any thoughts?

[sarcoid1234]

I have been told that the Flutter and the Acapella do the same job, but you have to hold them at the correct angle so that they vibrate your lungs which loosens the phlegm. I find that if I still have phlegm 'stuck after I have done the Active Cycle of Breathing and nebuliser the Flutter can loosen that last bit of phlegm. Not much, but it does the trick.

Also I used to wake an hour or two after getting to sleep with a 'rattle' in my lungs and the Flutter would get rid of the phlegm; you need to hold your cheeks with the other hand (so that they don't move) and do the breathing in and out for 20 or so times, (a physiotherapist told me this) and then cough, and then do it again until you feel free of the mucus. I then suck a Fisherman's Friend while i lie down and go to sleep as it seems to settle my lungs (contains menthol and eucalyptus).

Also you could raise the head of the bed by 6 or so inches which is explained in inclinedbedtherapy.com/ Someone on this blog a few weeks ago said how good she has found this. Instead I have bought a wedge, 31inches long and 6 inches at the pillow end, I no longer wake up after one or two hours with a rattle in my lungs.

I hope this helps. We are all on this site to help each other with our experience.

[corriena in reply to sarcoid1234]

The acapello is more forgiving on the angle and can be used laying on your side i have had mine for a week now and i find it realy efective

[Lynzilou in reply to corriena]

Does it help with coughing up mucus?

[corriena in reply to Lynzilou]

Yes thats the point of them something to do with posative presure or negativ i cant remember witch and it helps to bring mucus up to clear. I am finding it very efective

[Lynzilou in reply to sarcoid1234]

Thank you so much for that. I have printed off the breathing techniques and will start practising today. I will also look for something to elevate my mattress, I think if I raised my pillow by six inches it would be too much of an incline for me, because I have always slept on a very low pillow. It is certainly worth a try. I went to bed last night at 11, as soon as I lay down I started coughing, so I coughed up what I could, then went back to bed with the pillows arranged around me in a triangle shape, so I was almost upright. No good. Got up, coughed, went back to bed, coughed.... and repeated this until 3 am, when I came downstairs. Still coughed, out of control and at 5 am phoned the out of hours docs. Eventually paramedic came, gave me a nebuliser, but didn';t have any specialised knowledge, but stayed till 8.30 when he spoke to one of my gps and got me an appt for 11.50 this morning. The gp has given me steroids to help in the short term, and written to the chest consultant who hopefully will have some facilities to help me. I am completely exhaused! and Cross! - where did this come from?!!

[sarcoid1234 in reply to Lynzilou]

Hello again. you say you have been given a nebuliser; if you have been given it to keep you could ask your doctor to refer you to a physiotherapist who will test you to see if you are suitable for 7% saline solution (in individual doses) which you put in the nebuliser which produces a sort of steam which helps to loosen the phlegm. Your doctor can prescribe the 7% saline.

I am surprised the Active Cycle of Breathing coughing (huffing) does not help to bring up the phlegm. I was in a bad state before I started doing it as I used sleep sitting upright in bed with two or three pillows behind me. When I was in hospital with a lung infection in 2012 I slept sitting up with the head end of the electric bed almost upright! After a week of that the physiotherapist came to see me and taught me Active Cycle of Breathing (huffing). I could then lie down; it was like a miracle! I still do ACB every morning and night.

I wonder what is your lung condition?

Have you had your phlegm tested to see if you need a dedicated antibiotic? I think you have to see the doctor first and then the doctor's receptionist will give you a little pot which you cough into (at home!) and take it back to the doctor and it is sent to the local hospital for testing. I have been told that if phlegm is not white it is most probably infected.

I do hope you are better very soon. The paramedic seems excellent.

[Lynzilou in reply to sarcoid1234]

Wow! Thank you, you are a mine of information. The nebuliser was a temporary thing he brought with him, but my daughter is looking into buying one.

The ACBT does work! I had been trying, but not doing it properly, but after I read your previous message, I printed off the directions, and last night, sat down, followed the instructions carefully, and was surprised by the success, so I have to say a huge thank you to you, becuase it was your advice which made me do things properly.

I have pulmonary fibrosis, which they say is incurable and will get worse - oh happy days!!

The mucus is clear, and I understand not infected, just an intergral part of the condition. I was referred to the chest clinic two years ago, and they said I had interstitial lung disease, which sounded dire, but the consultant sort of said it was something you live with, and I didn't feel that bad most of the time, just short of breath under exertion, but recently it has got much worse, very quickly. Probably because we had the chimney taken down and all the dust./soot billowed into the lounge, and stayed resettling for days! If only I'd known!!!

Thanks for your good wishes, I think my "getting better" will depend more on managing what I've got to improve my quality of life.

You are a gem. Thanks again x

[sarcoid1234]

One further thought. Have you tried not drinking milk, especially milk with cream in it. It is well known I think that milk and cream can produce phlegm.

[Lynzilou in reply to sarcoid1234]

No, only drink skimmed milk in tea, and never at bedtime.