Carbocisteine not working?: So I saw my... - British Lung Foun...

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Carbocisteine not working?

ladytelita
ladytelita

So I saw my new Respiratory Physiotherapist a few days ago and found out a great deal I didn’t know. My chemical sensitivity is far worse than I realised and combined with heat it is awful. There was something in her room that set me off and it was also very warm in there. My breathing got steadily worse through the discussion. She said she’d try to use another room next visit or ensure as few chemicals as possible were used in there for next time.

She told me I had a breathing disorder. She put a monitor on my finger for half an hour and observed me for that time whilst asking questions. I could see my oxygen levels pinging around like one of those very bouncy little balls that zips across a room when let go. At times the alarm even went off on it. She has decided she wants her whole team to work with me over time and to have me change to a local respiratory consultant as I have to travel just under an hour to reach my current consultant, further if she is at another hospital.

She has stated that the carbocisteine isn’t working. I’ve been on it pretty much since diagnosed and was surprised. Before I was on it I produced quite a lot of phlegm daily but now I can’t get any up except rarely, even when I have an infection. She seemed to think using a nebuliser with saline solution (I think) would work better.

I am hoping her letter arrives about this meeting before my next appointment with my current consultant so I can take a copy for her to see. If I can get her on board too my breathing issues should start to improve given time.

Has anyone else had a similar experience regarding carbocisteine? I hadn’t heard about this before so any experience you may have had would be useful if you’re willing to share.

Thank you.

P.

15 Replies
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Hidden
Hidden

I too have been on carbocisteine for years, but never felt it was helping me in any way. I'm thinking of giving it up. I do nebulize with saline, and I also use a salt pipe which I bought off Amazon. There are a selection avalable on the following link. amazon.co.uk/s/ref=nb_sb_no...

Mine is the Salitair.

Don-1931
Don-1931
in reply to Hidden

I think if you give carbocisteine up you will find that it was helping you. It works by thinning gunge so that can come up from the lungs and back down to the stomach without reaching the mouth as it does in healthy people. Well that's my theory, I've recently been put on it and find and I'm not coughing up anything like the amount I used to do.

2greys
2greys
in reply to Don-1931

I don't produce much nor cough. I tried not taking it and yes I defiantly noticed the difference, I developed a cough and what came up was like thick jelly, surprised that it actually came up. I was soon back to taking Carbocisteine again.

Hi P. Carbocisteine does not work for everyone. I cant use it. I have asthma besides copd, and when the asthma is playing up I have a lot of thin frothy mucus which gives me bronchospasm when trying to get it up. So the last thing I need is something which thins my mucus! Ive no idea if this might apply to you but it sounds like you were productive before you started the carbocisteine. But we're all different and half the battle is finding meds which suit you. If it was me, Id go with the suggestion of saline nebbing and see if that helps. Good luck.

ladytelita
ladytelita
in reply to O2Trees

I have asthma too and get the exact same thing. The spasm just hurts. It sounds very similar to my issue. I hate the fact that I spend so much time with gunk sitting in my throat and can never shift it until an enormous brutal cough gets it. Then it spends half an hour building up the next load. *sigh*

I have to wait on the letter and next appointment before changing things. Hopefully all will work out for the best.

P.

Hi Hun, I have been on Carbocisteine for about 5 years now, Works for me , But not everyone are the same. I do not use a Neb. I do however use a salt Pipe for about 3 years, it helps re Breathing technique. My Oxygen is a Huge help, and if I feel a bit Mucusy I do the Huff a few times. Mostly, I do not have any Mucus, so, I do believe the Carbocisteine works for me. Stay well as you can Hun. xxx

Smyth
Smyth
in reply to Hacienda

Hello , I do have lots of mucus , which causes me to cough all the time , The mucus can be quite thick , what would you suggest to break this down .

Thanks

Jimmy

Hacienda
Hacienda
in reply to Smyth

Hi Jimmy, have you asked your GP/Consultant. I still take Carbocisteine, it does what it's suppose to do, I am also taking Azithromycin & Long Term maintenance Prednisolone 10mg per day. It has been many years since I had Lots of Mucus, I don't have it these days. Good Luck . xxx

Smyth
Smyth
in reply to Hacienda

Thank you , will speak to my doctor regarding Azithromycin , this might help.

Jimmy

I found carbocisteine made me want to sit and doze all day. Carbocisteine takes 3 days to function fully so it built up. If I sit all day my chest gets congested. I tried smaller doses but it still had the same effect. It took 3 days to get back to normal so now I won’t take it. I have found methotrexate and codeine have the same effects. I have just found an eye drop medication yellox has the same effect. I suppose we are all different and at least I have learnt to recognise the signs of meds not agreeing. I use the active cycle of breathing mainly now to get the mucus up.

X jo

I use a Neb if I have a flare up as suggested by Nurse. 9% Saline. I wonder if consultant meant that you needed additional help on top of the carbocysteine which wasn't working (well enough). I appreciate the consultant wasn't talking to me! I swear by it and only get a cough and extra mucous at exacerbation time. You can only see how it goes without it, though I think it would make me nervous to stop, if you feel you definitely need it go back and ask for it to be prescribed again. Nobody likes change. I hope it turns out okay, good luck - don't forget your breathing exercises

Hi,

I've used carbocisteine for years and a couple of years ago thought it wasn't doing anything for me so I stopped. I then learned quickly how much I needed it. I'm happy to stay on it now and as it has no side effects it's great.

All the best,

Joan

Hidden
Hidden
in reply to Burbagegran

OK, perhaps I'll stick with it. Only I'm taking 18+ tablets daily, so I'm trying to find ways of cutting some out!!

Burbagegran
Burbagegran
in reply to Hidden

I know what it's like to take a load of tablets, I take 2 carbocisteine twice a day plus 11 others and my inhalers but I found out I couldn't do without them.

However, you are different, what's right for me might not be for you. You go with your gut instinct. You can always go back on them if it makes a difference.

Anyway, good luck and hope you stay well.

Hello .. I use the saline through the nebuliser .. some days I find it works .. although I do find trying to get any gunge up exhausts me.. I was on the carbosistein for a few months but I diddnt feel it helped me much at all .. good luck xx

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