Should I take my prescribed Carbocisteine medication

[GinP]

I am a new member recently diagnosed

I have a mild Bronchiectasis condition recently diagnosed. It has little effect on my normal daily walking regime 5-6 miles x 5 days a week-I do not become breathless but my once 9-10 miles per day is no longer possible as I tire more quickly- I have no apparent lung mucus/phlegm to clear and I do not need to cough. My hospital consultant has prescribed a Fostair inhaler for which I have no objection if he feels it’s a good thing for me but I am uneasy about taking the Carbocisteine capsules he also prescribed as they seem to be for for much more acute sufferers. The leaflet instructions makes no mention that this is a preventive medication and refers only to the drug being designed to make lung mucus less sticky and thus easier to clear by coughing, which I do not have

Does anyone in a similar situation as the above have a view- I shall consult my GP but dealing with medical professionals by telephone consultations, both at GP and Consultant level leaves much to be desired and in this case, I suspect, an over reaction/ misunderstanding of the true state of affairs which may have been avoided in face to face consultations

[Mooka]

I think you will find that most Bronchiectasis sufferers are prescribed carbocistene. The only person who can really say if you should take it is your consultant. GPs tend to have little knowledge of Bronchiectasis. My Bronchiectasis is mild and on a day to day basis I’m not bothered by much mucus. But am when I have an infection. I do use a nebuliser twice a day and this helps loosen anything anyway. I take 4 carbocistene a day which was reduced down from 6. Not sure why you would have an inhaler unless your lung function tests showed you would benefit from it. Does your consultant specialise in Bronchiectasis?

[GinP in reply to Mooka]

The consultant is a Respiratory Team member at our local NHS hospital but just consulting over the phone doesn’t lend itself to easy understanding of the necessity or otherwise of the drugs at this time with no mucus, no cough and only slight impairment- the gas tests I underwent prior to the consultants phone call , according to the nurse at the hospital were just above the minimum permitted levels and as yet I do not feel the need for drugs but I don’t want to ignore the recommendations if the condition deteriorates as a result of delay on my part.I have to assume that even without meeting face to face the consultant is correct to start me now, I suppose.

Thanks for your thoughts

[Mooka in reply to GinP]

If you check out the BLF thread there are a few Bronchiectasis sufferers on there and you could ask your question there. What they will tell you is it’s important to have a respiratory consultant that specialises in Bronchiectasis. Unbelievably some respiratory consultants don’t really understand it. If you are mild at the moment it probably won’t matter to you too much but it will if you start getting infections. Although my Bronchiectasis is mild I was colonised with pseudomonas a bug that hides up and keeps coming back. I see a respiratory consultant at addenbrookes connected with my autoimmune disease but he chose to ask a Bronchiectasis specialist at my local hospital when I was having problems. I understand what you are saying about telephone appointments particularly if you haven’t met the person. Good luck I hope you soon get back to proper appointments.

[GinP in reply to Mooka]

Thank you, with NHS consultants one can’t always find data upon which to assess the candidate, so I shall dig a little deeper and seek a second opinion as necessary. It was for just such a reason that I opted to go private for a HoLEP laser procedure in July as I couldn’t find any data on the NHS surgeons to whom I was first referred, even from their dedicated governing college, and I wasn’t prepared to let a surgeon of unverifiable medical pedigree undertake invasive surgery

[NorthernGirl3]

I’ve been offered carbocistene several times as I do have problems with mucus and repeat infections. However, I have refused it as it has side effects that I wasn’t happy tolerating. I take a lot of medication and none of them come without side effects but their advantages outweigh their disadvantages.

[GinP in reply to NorthernGirl3]

Thank you for your input, I understand your concerns which mirror my own for the leaflet with the medication as usual lists a string of possible side effects and this medication worries more than a little. I’ve had a succession of drugs in the run up to surgery in July, none of them with particularly nasty side effects but my body is very sensitive to powerful modern drugs and until this year I had avoided all, apart from the occasional antibiotics for common bacterial infections, but they have swung me to and fro like a pendulum so to speak and violently disturbed my digestion system , and so much so that for me the ‘cures’ were as bad the condition they were supposed to deal with.

I am averse to taking drugs of any kind other than Paracetamol from time to time but it looks like my luck has run out this year!

[Sops in reply to GinP]

Hi,, i have bi-lateral Bronch, and take carbocistene when i find it hard to shift sticky thick mucus. My consultant calls it the mucus buster and i have not experienced side effects taking it this way.. I take azithromycin 3 times a week and that did have side effects but i am more settled now. I am not medical thoughtand offer this as thoughts rather than advice.

Sopsx

[GinP in reply to Sops]

Thank you, a useful comment on your two prescriptions

[Patsy164]

Hi Ginp I have been prescribed Carbocisteine but since being put on azithromycin, I suffer with pseudomonas, I don’t bring up a lot of mucus anymore so my consultant advised me to just take it when I have an exacerbation. I would talk to the consultant about your worries with taking it maybe he may say the same. I felt that it was pointless taking it when it doesn’t do anything for me. A few others on the British Lung Foundation site have been the same.

I can understand your worry about the telephone consultations, especially as you haven’t had a previous face to face consultation.

[GinP in reply to Patsy164]

Good information, thank you. I made contact with a Bronchielectasis specialist consultant and he has said that if I don’t have mucus, then I do not yet need to take either of my drugs- so Inshall hold them in reserve and commence them, as and when

[Patsy164 in reply to GinP]

That’s good now you know you don’t have to take it all the time. Good luck and have a nice Christmas x

[GinP]

Thank you and have a good one too

[Debbie2005]

Hi I’ve just seen your post and on Christmas Eve I was diagnosed with mild bronchiectasis and was given a course of the same medication six tablets a day when I am only coughing up a small amount of mucus etc. Just wondered whether I really need to take these tablets now or to leave it when more severe.

I am devastated Googling all about this disease which is never heard of and wondered if you’d managed to source more about it and advise if you could recommend the best places to source this info from?

[GinP]

I expect you are as alarmed as I was last month when I received this diagnosis, and I can find no definitive cause for the onset of the condition but I am deeply suspicious that mine is more than coincidental with another unwelcome surprise condition which occurred in April this year and has now been resolved

It doesn’t much matter if I am justifiably suspicious but it does matter that I should only take drugs which are vital to prevent the onset of the common symptoms- Iexpect you have visited this site :-

blf.org.uk/support-for-you/... this and the NHS website on the subject was helpful.

I have no medical training so anything I say should be regarded as subjective and not in any way anything upon which anyone should rely.

However, as I reported earlier I was told that as I do not have symptoms ie, no mucus/phlegm/sputum or coughing then,at present ,I do not need to take the medications - from those comments I have deduced that the drugs are not a way to prevent onset so I shall only commence the medications , however reluctantly, as and when symptoms begin to appear (your situation although mild is a little further advanced as you report that you do have some mucus/coughing)

It seems to me that it is vital to avoid a build up of mucus as this could become a seat for bronchial infection which I understand must be avoided hence my decision to use the medications only when I need them, As a further comment I am puzzled and without an explanation as yet why

If the condition results in widening of the Bronchioles which in turn enables mucus build up, then why is my inhaler to be used, which contains two gases, one of which is a bronchodilator- I shall research that when I can be bothered

Good luck with your medications and defer to your clinicians for further advice to set your mind at rest, if that would help

[Greenfingers20]

Hi there. I have mild Bronchiectasis. I have Coamoxiclav antibiotics emergency supply for infection. Also a Shaker classic -a flutter ddvice-to loosen mucus. I haven't needed carbocisteine so far. Diagnosed a few months ago after being told by gp I had a tickly cough for 8 mths! Now permanently damaged left lung.

[GinP in reply to Greenfingers20]

I can empathise with your experience, since was first diagnosed with Atelectasis in both lungs but no mention of that damage which is permanent when the Bronchiectasis condition was subsequently diagnosed but my consultant seems to have prescribed drugs rather hastily for the latter. I hadn't heard of the Shaker device but I shall keep that in mind as and when the condition deteriorates. Thanks for your input