Carbocisteine: Would like to hear from... - Asthma Community ...

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Carbocisteine

23 Replies

Would like to hear from anyone taking Carbocisteine.

My doctor put me on it as constantly got lots of mucus in my airways that

causes me breathing problems,and since taken it my breathing has been great(hope

not spoke to soon).

Im still under going tests of asthma and other ailments that mimic asthma.

thanks glynis xxx

Read more about...
23 Replies

I've tried it a couple of times but it hasn't really helped me. It seems relatively benign in terms of s/effects tho so if you feel better on it, that's great. I was told that it helps some people but not others, don't know why. What dose you on?

There is a new drug being trialled called Bronchitol which has apparently been very successful in thinning mucus. Will only be available for cystic fibrosis initially but hopefully in a couple of years for anyone with chronic bronchitis/bronchiectasis.

Here's a link if you're interested: pharmaxis.com.au/bronchitol

My daughter works in clinical trials so when I hear more I will post about it, but it won't be any time soon!

Hi glynis

Ive been taking 2 375mg carbocisteine tabets 3 times a day for quite a while. i find it really helps me as my main problem is the amout of mucus in my lungs, i haven't experianced any side effects. I'm currently haven't tests to c if its due to amything eles as my cons are now not sure its asthma, so i'v e been refered to a cf con.

Hope it carries on working for you

best wishes

Clo xx

Hi Polly,

im on 375mg x4 aday and realy helping my airways that are constantly full of gunk that wont come up and constant gunk swollowing.

Since started it few days ago had 2 good days as never hardly get any good days,so hopelot more good

days xxx

Duckie,

Doing better on the tabs had two good days and hope many more.

my doc doing tests,reverse airway test did not help when given salbutamol and retested.

got all asthma symptoms but got have a heart test in 2 weeks and see my con in june.

Hope then will know what it is,asthma,copd etc.

lungs full of air.

love glynis xxx

Dukie,

who is it you are being refured to? im under an asthma /resporatry con.

love Glynis xxx

Polly,

thanks for web link ,good to here new meds on way for people with mucus.

love glynis xxx

glynis has your con referred you to a chest physiotherapist to be taught techniques to get that stuff out of your airways? altho the mucodyne helps make it less sticky, you still need to get it off your chest

I spend about 45-60 mins every eve on physio - not as bad as it sounds cos the method I use can be done whilst watching tv. It brings all the yuk into main airways so can then cough it up. Mucus lining the airways is a perfect, warm culture for bugs so best get rid of it. I do wish mucodyne worked for me but my mucus is as thick as ever, yeuuch! x

Polly,

no ont do physio for mucus only started tabs friday and still going down the asthma road as well yet.

Takes ages all the waiting about and under my doc but not got asthma nurse at our docs but hes good.

Hope and fingers crossed this helps and not just a good day or so like normal.most days bad xxxx

polly,

got go now as family down soon for their tea.

love to here about physio.will be on later or send a pm.

thanks chat soon love Glynis xxx

Hi Glynis

I go 2 hearltands birmingham, was under the serve/ brittle asthma clinic but now with the cf clinic both speclist centres. I also do daily physio with hyper tonic nebs morning and night

gd luck xx

was doing some research and this sounds similar to you.

In patients with chronic bronchitis as well as bronchiectasis, chronic cough and sputum production are the major symptoms. The sputum is usually clear and thick. Periodic chest infections can cause fever, dyspnea, coughing, production of purulent (cloudy and discolored) sputum and wheezing. (Wheezing is a high pitched noise produced in the lungs during exhalation when mucous, bronchospasm, or loss of lung elasticity obstructs airways.) Infections occur more frequently as bronchitis and bronchiectasis progress.

hi again glynis

there are a number of different techniques of chest physio & several devices to help move mucus upwards - really you need to see a physio who will recommend what's best for you.

if mucus production/clearance is a persistent problem for you, ask your con for a referral

like duckie I see an adult cf con at a specialist hosp as the jury's still out on my actual diagnosis, the best guess seems to be a combo of asthma, bronchiectasis & ABPA

glad the carbocisteine suits you!

Polly thankyou for your pm,carnt reply as you chose not torecieve them.

will look at the link you sent me ,thanks again love Glynis xxx

sorry glynis, have pm'd you again to explain!

love pol x

Polly,

thankyou for your messages by pm and web links.

sent you a email so you got mine now .

love glynis xxx

Hi polly

Hi polly

you sound very simlar to me in regards to seeing a cf con and not haven't an offical diaggnosis, could u pm as you the 1st person i've come a cross in a simlar situation and it would be great 2 talk

best wishes

clo xx

I have also just been in a similar position, referred from the Severe and Brittle Asthma team at Heartlands to the CF doctors to query the diagnosis. My sweat test (repeated 3 times) was very much borderline, but they took blood to look for genetic mutations and none were found so I'm officially clear of the CF diagnosis. I still see the CF dietitian as I need to get my weight up to a healthier level - my BMI is not too bad (18) but they say if I can get it to 21 then I should have far fewer chest infections.

Thank god for Carbocisteine,

Doing realy well on it with my other meds so hope stay that way

then hope in june find out what my problem is Asthma or mimics like asthma.

love from a very happy Glynis

glynis that's great, long may the improvement continue for you, it's lovely to hear some good news :)

clo I've emailed you I hope you get it ok!

I think there's been a lot of research into genetic variants of CF lately & much milder forms discovered so maybe this is why some of us have this ""query CF?"" when we don't seem to fit the pattern for anything else. I know that bronchiectasis (lung-wise) tends to be treated with the same drugs/dosages as CF

Had two brill days but spoke to soon, after the gym session first time in ages then town later my asthma is back on full forse and so puffed out.

Feeling sad could swear as had 2 good days in 4 months and wam back to square 1,thaught it was the new tabs. so not a happy easter bunny 80( just want it go away for goodx

Im doing a lot better on Carbocisteine after a rocky start.

So glad my doctor put me on Carbocisteine,my cough as virtualy gone

and all the mucus in my airways is a lot better as long as I take my pills.

Got a heart test this week and see my con in june then should know abit

more about my condition xxx

ps- my breathing is still bad but no cough now.

Doing well on carbocisteine and breathing alot better.

Would like to hear a bit about what illnesses mimic asthma.

love Glynis xxx

edit-had one heart test, got go for a ultrasound scan and see con in June.

also what is a cf refural?

CF= cystic fibrosis. So the people who are talking about a 'cf referral' are talking about being referred to a specialist cystic fibrosis consultant because perhaps the pattern of their lung disease. Cystic Fibrosis is characterised by thick sticky mucus in the body that causes gut problems such as pancreatic insufficiency and perhaps more importantly here it causes frequent chest infections leading to damage of the lungs.

When talking about conditions that may mimic asthma there are a lot of conditions, some common and some not so common.

Bronchiectasis - this is scarring of the lungs, if you google it it will give you causes and symptoms. This is usually associated with shortness of breath and frequent chest infections so may be considered an alternative diagnosis in someone with asthma who suffers from frequent chest infections.

COPD can also mimic asthma if detailed lung function tests and a CT scan have not been conducted to confirm or rule out other conditions.

These are the only ones that I can think of off the top of my head but I know that there are quite a few others. I have found with every consultant I have seen it has been worth asking whether it could be anything but asthma causing respiratory symptoms as it sometimes encourages them to think outside the box and investigate further.

I hope this is of some use to you.

Regards

Em

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