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Carbocisteine

y_not profile image
69 Replies

Hi All,

My GP has prescribed a course of Carbocisteine in the last few days. Having told me that they are "quite expensive; £13 a hundred", he suggested a months supply and review after that if they have worked before deciding whether to continue with them.

I've been taking them for four days so far - when should I notice a difference and what will it be?

Thanks for any advice.

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y_not
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69 Replies
squady profile image
squady

hi I take six a day and I have been told that will be for life

after four years I have very little cough and my lungs are pretty much clear,but when I get an infection I do cough a bit.

I have bronchiectasis and severe stage three copd,i had a lobectomy in 1971 but they had to leave a bit of bad lung in due to possible breathing problems.

now I have paf,but the drugs are not working

y_not profile image
y_not in reply to squady

Thanks for the reply, since stopping smoking (4+ years ago) I rarely cough but I do have some difficulty clearing my throat of the gunge - and that's a constant thing (not just mornings).

Although my spirometry etc are pretty good the breathing is getting worse and I'm wondering if that's why they are trying these tablets?

velvet55 profile image
velvet55

Hi y not

I take two twice a day.

I find it easier to clear my chest, and my phlegm is thinner and easier to shift. It was really thick and sticky before l was prescribed them.

I can't remember how long they took before l noticed a difference, probably happened gradually over a couple of weeks.

I should think you will notice after a month.

I am lucky, they have worked for me, as apparently they do not work for some people.

Keep with them for the month, l hope they work for you.

Good luck

Velvet xx

y_not profile image
y_not in reply to velvet55

Thank you, I'm hoping that they will make breathing a little easier so I plan to continue with the full course.

Glad they work for you

FarmerD profile image
FarmerD in reply to y_not

This is a drug to help clear phlegm,if it works.Did,nt for me,not sure the cost should be mentioned.Next time tell them how much you paid in tax when you smoked,Twice as much as we cost in fact.D.

Cuddy profile image
Cuddy in reply to velvet55

I ditto that.

peege profile image
peege

Hmmm, well I was told they take up to three weeks to work and so take them all the time. Was told to take a maintenance dose of two twice daily and when necessary to raise it to two three times daily. 

Have a really good read of the leaflet it might state this. £13 a hundred? Cheap I'd say for the help they can give in helping to keep mucus fluid & therefore infection control, fewer expensive  antibiotics or GP visits. 

Good luck with it, when asked my ex GP said they are harmless. P

Nanny1086 profile image
Nanny1086 in reply to peege

Have you tried the flutter device ? I use it instead of the tablets and I think it's of greater help ,,,,,to me ,

y_not profile image
y_not in reply to Nanny1086

What an interesting option - not come across these before, at around £60 is it something I should talk to a GP before using or is it something I can just purchase and try/use?

Thank you

B0xermad profile image
B0xermad in reply to y_not

you can get a flutter and acapella on prescription now

Nanny1086 profile image
Nanny1086 in reply to y_not

Talk to your GP first ,,,,it was the COPD nurse who reccomended it to me ,,,,as I take a lot of medication for other illnesses aswell as asthma/Bronchiectis /copd,,,,I still have mucadyne or carbosistine on a repeat prescription in case I need to take them aswel, ,and that's happened this year ,,,where I was more than willing to take anything and everything for the repeated chest infections I've had this winter, ,,,,but do think the flutter is a simple thing that offers a solution without medication ,but I would reccomend talking to your GP first ,

appydaze profile image
appydaze in reply to Nanny1086

00

Dave2436 profile image
Dave2436

Hello I have carbocisteine for some time but I have to say thay do not do a lot for  me

I wish thay did to keep thinks moving but I hope thay help you 

Best wishes dave

Nanny1086 profile image
Nanny1086 in reply to Dave2436

Try the flutter devise ,,,they're brilliant ,have a look on you tube ,

Lilylung profile image
Lilylung

Hi, I take them, two twice a day and I up them if I need too, they have worked for me, I hope they work for you.... x

Buzzytruk profile image
Buzzytruk

Hi.......I take this.. 1 or 2 capsules....most mornings depending on how I feel when I get up.

At the moment don't  I need it more often, it took a short time to take effect.

kernowdame profile image
kernowdame

I was prescribed these before being diagnosed with copd because I was waking in the night and coughing up loads of mucus, alarming amounts. Two days later it stopped . They reduced from 6 to 4 a day and ongoing. I don't think they are expensive -for me they were brilliant.

y_not profile image
y_not in reply to kernowdame

Wow, that's quick acting! I really want them to work because, having slept for an hour this afternoon (without a CPAP attached) my lungs are pretty awful right now one day, when I'm less stupid than today, I'll remember to attach the machine before sleeping in the afternoon!

Glad it works for you.

sploge profile image
sploge

they help me a lot jut do as your doctor told you and you will find they will help you just give them time ,I did stop them for a few days and I did find out what they were doing so I went back on them they do clear out your lungs

y_not profile image
y_not in reply to sploge

I'm one of those who want everything NOW! Impatient as can be, if I don't get the effect by the time the tablet hits the stomach then I start questioning if it's really working 😀

barbs47 profile image
barbs47

Hi y_not I have been prescribed these on two separate occasions once my by doctor the other time when in hospital. Unfortunately both times I had a bad reaction to them so no longer take them. I hope they work for you take care X.

Nanny1086 profile image
Nanny1086 in reply to barbs47

Hi ,try a flutter devise ,it's great help for chest clearance ,

barbs47 profile image
barbs47 in reply to Nanny1086

Hi thanks I have a flutter devise but (fingers crossed) I haven't had an exacerbation since having it and don't normally have any phlegm so haven't used it yet. x

Nanny1086 profile image
Nanny1086 in reply to barbs47

Snap ,but I was told to do a full cycle of the flutter even when not producing ,,,,,,,you'd be surprised ,,,,

barbs47 profile image
barbs47 in reply to Nanny1086

That's interesting I'll give it a try thanks x

Nanny1086 profile image
Nanny1086 in reply to barbs47

I really should practice what I preach ,,,,,,,used my flutter for the first time in about a week ,,,,,,and blimey ,,,,,,,,

barbs47 profile image
barbs47 in reply to Nanny1086

I really must try it !!!!!!

scorpiolass profile image
scorpiolass

Hi, I used to take 6 a day but now on 4 they to a few weeks to work but my mucus problems now much reduced. I understand they are long term use drugs; I will probably be on them for life.  X

Nanny1086 profile image
Nanny1086 in reply to scorpiolass

Can I suggest a flutter devise ,,,,,does the same thing as tablets ,,,,helps chest clearance with no added medication 

scorpiolass profile image
scorpiolass in reply to Nanny1086

I take them now as a preventer or reducer, of amount, thickness & stickyness. When I have excaccerbations I use an Acapela alongside as this helps to loosen it & bring it up. X

PastMeBest profile image
PastMeBest

Hi y_not, my wife had COPD and has been taking Carbocicteine for quite some time to help control mucus. She says it took about a week before noticing any difference so if you are taking them for a month you should see any benefit they provide. They really helped when she had Bronchitis and now takes them all the time.

Cost shouldn't come into it, if they do you some good.

All the Best. John

y_not profile image
y_not in reply to PastMeBest

Thanks John, the GP was a complete idiot (also told me I'd have to get used to feeling rubbish!) hence it's no surprise that he moaned about cost. Maybe I should mention to him how much I pay in NI contributions?

Pleased it works for your wife.

poppylove19 profile image
poppylove19

My husband is on this but a syrup because he cannot swallow the big orange pill.  It has helped him bring up sputum lying in the lungs which carry bacteria.  He was supplied this when he was in hospital recently.

Lynn_193 profile image
Lynn_193

Hi Y Not.... as others have said, what has the cost got to do with it?  Your GP is trying to lay a guilt trip on you which is highly inappropriate.  I have bronch in both lungs and once diagnosed, I was on 8 a day for many months.  Now it is under control, I don't take any.  Like any med, it takes a while for it to kick in.

You will get good advice on here.

God bless :-)

y_not profile image
y_not in reply to Lynn_193

Hi Lynn, It's just a numpty GP, moved on to another in the practice who lives in the real world!

Working full time, I look at the tax & NI I pay annually, add that the tax I paid whilst smoking (around £200,000 at todays value) and I really don't care about the cost!

Many thanks for your reply

briany profile image
briany in reply to y_not

helo, i had to see a locam at our sugery recently, he was a horrible man so rude, he tried to change most of my meds, when i said the regular doc plus hospital had put me on them he got realy angry, he lasted 2 weeks at our sugery, if i was younger and fitter i would have made a complaint but im just too tired to bother lol good luck brian

hallentine47 profile image
hallentine47

Like squady I take 6 a day and it is for life and it has helped. I was told to experiment with 2 and 4 and 6 a day and find what was working best for me. Difficult when I take so many other pills every day but I have settled on 6 a day. 

joyce741 profile image
joyce741

i take 1 three times daily, if I get a cold I double up until it clears 

Damon1864 profile image
Damon1864Volunteer

I have been on carbocistien for sbout eight years now they help me bring the mucus off my chest. You should start feeling the benefit of them within a week,I swear by them.

y_not profile image
y_not in reply to Damon1864

Thanks Damon, hope I get the same effect.

Timberman profile image
Timberman

I take three day which means I take £130 worth a year (other drugs are MUCH dearer). They are for life according to my medics.

toerag profile image
toerag

Carbocisteine, or Mucodyne just thins down the mucous making it easier to bring up. Dosage @ 375mg is usually 2 in morning, 2 at night. They take about 3 weeks to really notice the difference. If they fail to work or mucous is thicker than norma, Erdotin for 1 week will certainly shift things back to normal. Keep up with the tabs, I have been on them for about 4 years and they do help.....

y_not profile image
y_not in reply to toerag

Thanks toerag, fingers crossed that they work for me; I may well try the flutter device option as well, just to see if it helps.

Best wishes

Lynn_193 profile image
Lynn_193 in reply to y_not

I use an Acapella device and you can get it on prescription Tony.  Learning the breathing exercises will help shift the mucus and keep your lungs clear.  I found out about it on this site and my GP had never heard of it but willing to get it for me.  :-) 

lyndene profile image
lyndene

Hi I have been on Carbocisteine for over 5/10 years and they are to help with thinning my mucus and phlegm  they did take a while to start to work but they have helped me I have copd/ bronchiectasis these have been on the market for a long time so the cost shouldn't be that expensive. 

ClaraC profile image
ClaraC

@ Y_not Hi, drinking plenty of water, cutting out dairy produce & eating plenty of dark green leafy vegetables will also help with thinning mucus & is therefore helpful in expelling it. Good luck with carbocisteine. I managed to stop them by looking at my nutritional needs- so far so good all the best 😃

y_not profile image
y_not in reply to ClaraC

Oh ClaraC! You really want me to change my alcohol and takeaway culture in the name of health? 😂😂😂

Seriously, glad it works for you, I'm still struggling to get the weight under control so it's maybe something for further down the road ...

Brilliant that it's working for you - long may it continue.

Thank you

ClaraC profile image
ClaraC in reply to y_not

Thank you, but it will all help with the weight loss too. & half a squeezed lemon in a pint of cooled boiled water & a little good honey if desired, in the mornings first thing, not only helps clear the lungs; but helps with weight loss, gives you a daily boost of vitamin C & alkalizes your system. It's all the little things that make the difference. The Acapella device, suggested by Lynn sounds really good too. I love the helpful suggestions on this sight, it's really inspiring that people are so helpful. Good luck with your healing venture 😃

mskpjb profile image
mskpjb

y_not I was given Carbocisteine 12 years ago and was told to only take them when I have an exacerbation and then only for two weeks as they can upset the stomach. I think perhaps for someone who has Bronchiectasis, or anyone who has a lot of mucus to deal with it`s a different matter. Keep well, Sheila x

Nanny1086 profile image
Nanny1086

Hi ,was prescribed carbosistine ,and mucadyne at one time or another ,I did get benefit with them ,but thought this is yet more medication I'm taking ,,,so I asked the COPD nurse practioner if I really had to take them ,,,,,she suggested I try using a flutter device instead of the tablets ,,,,,so far so good ,,,,mine was prescribed by the GP ,but some gps practises can't afford to prescribe them ,they are on Amazon around £ 50 if your GP won't give you one ,,,,,I have to say ,,,it's not as simple as just taking a pill ,but if I had to buy one of these ,,,,,then I would willingly spend the £50 ,,,,I use it daily ,but should use it 3/4 times a day ,,,,,,which I do when I need to ,,,,it does the same thing as the tablets ,Ie; loosens the mucus from chest making it easier ,,,,,have a look on 

you tube ,,,for  a demonstration on how to use ,,,,,but it's really simple ,and no extra medication needed,best wishes ,

y_not profile image
y_not in reply to Nanny1086

Ah, Nanny, you mentioned this earlier and I've already done the YouTube bit ... for fifty quid it's got to be worth a try think I'll get Amazon to send me one (GP might supply but I could end up with the harbinger of death GP who will lecture me on the cost and how the NHS is in crisis and it's all my own fault etc, etc) so Amazon here I come!

Nanny1086 profile image
Nanny1086 in reply to y_not

It's best to do the full cycle ,don't think oh I don't need the first position of it ,,,,,,,that's what I did at first ,but when I told the nurse I start with it level as I don't need first and second ,,,,she said its best to follow the instructions as printed to get the full benefit ,,,,,I don't think you will regret your purchase ,,,,I know what you mean about GP and their targets ,,etc etc ,,,I'm lucky ,,,,I have a great doctor ,,,,,,please let me know how you get on and if you need any help with it ,best wishes

bluefish2001 profile image
bluefish2001

Hi I am on that I get three bottles a month 300 ml bottles 250/5ml I take 10 ml three times a day my doc as told me to drink pineapple juice it works in the same way as the carbocisteine I have tried it and it does work it as a pectin in it 

Sparkimoore profile image
Sparkimoore

Hi! I have severe "difficult Asthma" & get chest infections etc v bad. I have Carbocystine 375mg TDS when I have an infection. They are amazing! They really break up that chestiness so you can cough & clear your lungs. Worth every penny, that's for sure! I guess you'd have to take them for a week or so to start feeling the benefit. I doubt if they'd have the same effect if they were taken constantly but that's maybe cos I'm on toxic Mycofenalate which has controlled the wheeziness & asthma attacks that I'd have in a daily basis ( cos nothing else does)

Hope they work as well for you!

Had no side effects either.

Rose

dee_13 profile image
dee_13

Carbocisteine is to help keep your lungs clear.  I have to say that they certainly seem to be effective as I don't have any problem with 'sticky' lungs, for which I'm very grateful.  Give it at least a week, but you should gradually be able to take deep breaths, but I've also taken up yoga and this is wonderful for opening up the chest.  Keep on taking it.  It may be expensive but it's well worth it (thank goodness we don't have to pay for them!)

B0xermad profile image
B0xermad

Hi Y-not,I have been taking carbocisteine for 2 years now and without them my Bronchiectasis builds up and causes Pneumonia, taking 3 a day now after 6 a day previously I also use an Acapella device and what a difference it makes.I would say it took 3 weeks to notice a lot of difference but now I dip as they start to run out and pick back up again pretty much in 15 minutes .hope this helps you.

y_not profile image
y_not in reply to B0xermad

Thanks b0xermad, keeping up with the drugs but also ordered a flutter device as suggested by Nanny - hoping one, the other or both helps.

appreciate the reply

Gordon57 profile image
Gordon57

Hmmm, interesting to read why and how different people take this stuff. I have some capsules that I just use 'as required', if I feel I have some gunk that needs to come up and I can't cough it up I take one or two at bedtime and in the morning it usually shifts.

I now manage chest infections a lot better than I used to. It was a case of letting it set in before getting on to the surgery for antibiotics and steroids. Now I have them to hand and on repeat prescription, although I don't have to get them every month if I don't need them. I can recognise the symptoms and start the meds sooner, which means the infections affect me less. 

Only occasionally do I feel the need to get stuff off my chest, which is the reason I was given them.  Cost shouldn't come into it...

y_not profile image
y_not in reply to Gordon57

Thanks Gordon, the cost issue seems to be a regular with this GP, he removed emergency meds from repeat because I ordered them twice in November then again in March ... "do you know how much these drugs cost?"

He's a complete idiot who I have nothing more to do with. Another GP has added them back on!

I take the various inhalers but never feel like that actually make any difference ... I take them because they told me to (and a hospital doctor told me off a couple of years back when my wife took my during an exacerbation for shopping taking them!)

Hoping they have some effect.

Best wishes

Gordon57 profile image
Gordon57 in reply to y_not

Over the years I've gone through many inhalers. Initially I was only diagnosed with Asthma, this followed a serious bout of pneumonia in the early 90's where I was hospitalised for a week then off work for a few weeks after that.  I was given the blue Salbutamol which I used for many years until I started to have problems and it wasn't up to the job any more. 

After a couple of trips to A&E, where they just put me on a nebuliser each time and threw me out, I booked an appointment at the surgery. They did some tests and announced I had COPD. I was given a purple inhaler and told to come back in 6 months. I was back in a couple of weeks, the new inhaler was causing me to have a dry throat, even when gargling and rinsing afterwards. Terrible for me as I worked as a radio presenter and could hardly talk.

Over the next few months I tried several different inhalers. Just about all the 'combi' ones did the same to me. In the end I had a green Salmeterol and a brown Ciclesonide (steroid). This worked for me, and still does.  Shortly after, once we agreed I wasn't having issues, I was given Spiriva too. 

A few years ago I got a note in with my repeat prescription to advise that they were going to change me to a combi inhaler due to the sheer cost of the separate ones. I phoned, spoke to the surgery pharmacist, went back over my notes and she agreed to leave me as I was. 

I've experimented with not taking certain meds from time to time, I've learned my lessons there. The blue inhaler has always been 'as required' and some days I don't need to touch it, other times I will use it as much as I need to if I'm really short of breath. Often it's because I've tried pushing myself too much. 

The green inhaler is used twice a day as directed, it's a 'preventer' and I do feel it stops me getting breathless, although I don't go out of my way to reach that stage. The brown inhaler is also twice a day and I'm told this is helping to prevent soreness from my lungs and throat becoming an issue. Spiriva daily too.

I also take a Montelukaust tablet at night for asthma, and this is one where I know if I've missed a couple of days as my breathing becomes very shallow and difficult. 

I was tempted to get a flutter device at one time, but don't think I need it very much (yet...). 

Over time I've just got used to things and take what I need to and watch what I do. 

B0xermad profile image
B0xermad

I would ask for a pulmonary rehab sessions referral, it is  very helpful and informative,the physio i have guided me through my crisis at the beginning after diagnosis and still there as a constant source of information and support

y_not profile image
y_not in reply to B0xermad

Hi, I did the PR about four years ago, because of GP/hospital issues I am effectively starting again in a different area so, a decent GP at the practice (out of 5 GP's there is only 1 who is an idiot; the others are all very good) is currently arranging this - just waiting the dates.

Thank you

ipswich61 profile image
ipswich61

My husband used Carbocisteine to help with sticky thick mucus with his lung cancer. It helped him to deal with these symtoms, he did try to stop them but soon started taking them again.

Scouser58 profile image
Scouser58

Hello y_not,,,,,nice to read a doctor is trying something new,,even if it is expensive,,,,let's hope if it works you can stay on them,,,,,good luck with your testing,,,,,

usually you need to be on them at least a week,,,,or two to get the body 's build up,,,and then finding the best time of day to take them,,,are they before food? or with or after food?,,,,,,,good testing,,,ttfn from Karen.

Lynn_193 profile image
Lynn_193

Shows you what a great site this is... this thread prompted by Tony and reading everyone's comments has reminded me that I can take Carbocisteine when I need it to keep mucus clear and I currently have had my first cold in 2 years!  So off to the cabinet I go ..... :-) 

y_not profile image
y_not

Thanks to everyone for your comments - I find out more from here that even by a full-blown Google search (and it always makes more sense!). 

Still taking the tablets,  Amazon tell me that they've dispatched the flutter device and hoping that both work for me.

Best wishes all.

Christabella153 profile image
Christabella153

Carbosisteine work extrememly well on hard to clear phlegm i find them excellent but like a lot of medicines they might need time to biuld up in your body

Shan97 profile image
Shan97

I've been taking it for about 6months now. I found that for the first 2 days I got worse before but then noticed it working. now it helps me clear my chest easier also if I forget to take it I notice that I havent taken, it because my chest get all tight

Didgeydo profile image
Didgeydo

I have been on Carbocistein now for two years and without these my lungs would have been so full of phelgm,everyone is different to notice the change,what they are good for is the release of the phlegm when you cough it loosens the phlegm and therefore makes it easier to breath it take takes the sticky side of phlegm away from your lungs ,so that you can breath easier.I know without these tablets my illness would be a lot worse.

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