Carbocisteine : Hi there I have been... - Lung Conditions C...

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Daffodil77 profile image
57 Replies

Hi there I have been taking carbocisteine for over a month. I don't like it. Its making me weak & my tongue is dry & I have no energy. My body temperature is 35 & sometimes below this . I have now stopped these capsules. Did this happen to anyone else & is there another medication like this but without side effects?

It's one benefit with 10 side effects. It's not worth it.

57 Replies
teddyd profile image

Been on carbosistene for years with no issues. There are alternatives maybe have a chat with respiratory nurse or Gp .I hope you get something sorted out.

Daffodil77 profile image
Daffodil77 in reply to teddyd

Thank you for your reply. Glad it works for you xx

Batman1313 profile image
Batman1313 in reply to teddyd

Odd. I have taken it for years with no issues. Sorry to hear.

Bellaowl profile image
Bellaowl in reply to teddyd

I was on carbocysteine for a year until the yellow colourings caused constant allergic reaction.

I was told Mucodyne 375 (made by Sanofi) would not have colouring so took 1 tablet only to try. The itching started within 12hrs.

The patient leaflet said it contained colouring but the patient leaflet on Net did not.

I wrote to Sanofi medical dept and was told the current capsules do not contain sunset yellow or quinolone. However they have a life of 36months. Ie the tablets I was given was in date but not totally up to date.

I’m now writing back to Dr Awais to find out the batch numbers of this without the colourings.

I don’t know daffodil 77 if an allergy reaction to the dyes is your problem. I put it out there to consider

The alternative to carbocysteine (Brown abd Burke) is

Mucodyne 375 made by Sanofi

They seem very helpful if you feel able to contact Dr Awais and explain what is happening.

I find the medicine itself is helping to reducing my cough and the stickiness of the phlegm

Littlepom profile image

I can't take it. It makes me feel sick. Some people take nacsys which you can buy on the internet. I nebulise isotonic saline ( much kinder to the lungs than hypertonic) and salbutamol every day and it works a treat.

Daffodil77 profile image
Daffodil77 in reply to Littlepom

Yes I will try Saline separately in nebuliser too. I use Saline & terbutaline together. Maybe I should use Saline on its own too & see if it helps. Thank you xx.

Littlepom profile image
Littlepom in reply to Daffodil77

I'm not sure what turbutaline is. I put sabutamol into the nebuliser first. In my nebuliser there is usually a little bit left when it stops so I add the saline to that. I hope that it helps.

Daffodil77 profile image
Daffodil77 in reply to Littlepom

Terbutaline is a nebuliser solution. I used to use ventolin solution years ago but it gave me the shakes. My hands used to shake a lot. I am fine with terbutaline. I was told to mix the terbutaline & Saline together. I don't use all the Saline. I leave about quarter of an inch of Saline in the nebule as told by my doctor.

Grayjay profile image
Grayjay in reply to Littlepom

Is it ok to mix Salbutamol with Saline? If so what are the benefits? Might try it if it is.

Littlepom profile image
Littlepom in reply to Grayjay

I mix salbutamol with 0.9% isotonic saline. Done once each day every day it thins and loosens the mucus associated with my bronch so that I can clear it before I go to bed. It is usually suggested twice per day but I don't need that. I have been doing it for years and have only had about 1-2 exacerbations each year, all following a chest virus. A very clever registrar who went on to be a respected consultant once told me that pseudomonas hates saline but it doesn't make money for drug companies. Now they are doing a study of isotonic saline versus carbocysteine and I will be interested to know the results.

Grayjay profile image
Grayjay in reply to Littlepom


Thepainterswife profile image
Thepainterswife in reply to Littlepom

One of the respiratory team told Geoff that Salbutamol should be taken first to open the airways followed by the saline about 20 minutes later which then shocks the lungs into bringing up the mucus through the now opened airways. It works well for Geoff but he was surprised that the method wasn’t used in hospital and said that sometimes he’d been given both at same time The respiratory nurse said basically that’s a waste of time and is purely due to hospital staff being overstretched 🤷🏻‍♀️

Littlepom profile image
Littlepom in reply to Thepainterswife

It all depends on what suits you best according to my consultant. I do the salbutamol first.Also when I was nebulising antibiotic I nebulised salbutamol before the ab

poppyshola profile image
poppyshola in reply to Littlepom

That's interesting Littlepom... I take Carbocisteine and swear by the but was told by consultant that not everyone likes them .. After escaping infections for almost 2 years during the pandemic, I had to have IV 3 times now and getting problems with my veins getting blocked now so they would like to try me on nebulised Meropenem now ..

Littlepom profile image
Littlepom in reply to poppyshola

Yes it's a strange and complex condition. This is why we bronchs need to be under the care of an experienced brpnch specialist. Even they spend time chasing the bug and 'sucking it and seeing' when it comes to antibiotic treatment. So many times what works in a petrie dish doedn't work in us and likewise, what doesn't work in the petrie dish does work in us. I hope that meropenem helps. Have they tried a midline instead of a canulla?

poppyshola profile image
poppyshola in reply to Littlepom

I have a longline put in every time I have antibiotics now because my gut can't handle the oral type ... ... the line is like a strand of embroidery silk inserted into the vein allowing me to do them at home.. very clever isn't it 🙂

Littlepom profile image
Littlepom in reply to poppyshola

Yes, it is such a change from the bad old days when we had to sit in a bed in hospital for 14 days although perfectly well, at the mercy of when the nurses would decide to come and put in the ab. When we knew perfectly well that we cd do it ourselves.

poppyshola profile image
poppyshola in reply to Littlepom

Yeah, my first experience of IV antibiotics was in our local hospital.. stayed in for 10 days.. injections in the stomach to make sure i didn't get blood clotting .. and to stay in my room like a big GERM so as not to infect others ... was so boring ..Old people moaning with pain I felt so helpless, bored and like you say didn't really feel ill enough to warrant staying in bed ... Don't get me wrong I felt looked after in the fact that whenever I felt that I had developed an infection they would find me a bed ASAP.. but because I had a poorly gut as well as poorly chest since I was 9/10 nurse old .. I felt quite sure that I could have Cystic fibrosis.. and because I kept asking, are you sure I don't have CF because I have so many of the symptoms... but at all times I asked I was told NO I don't have it .. My consultant asked me if I would like to be referred to the Royal Papworth Hospital which are a top class hospital for heart and lungs.. I snapped it up .. I've never looked back ..They look after me so well, listen to my concerns and are so understanding, gentle and kind ...they tested me for CF and found nothing ...

I'm so glad I was pushy...

Littlepom profile image
Littlepom in reply to poppyshola

Sadly I am always saying that we have to be proactive in our own interests and vociferous in sourcing the right treatment. My bronch consultant who is top of her tree has been convinced for years that bronch is on the cf spectrum. They just haven't found the right gene yet. Given my own lifelong problems with food absorbtion alongside bronch and talking to people like you I am convinced that she is right.

Italia profile image
Italia in reply to Littlepom

Hi Littlepom, what % is your isotonic saline?

I got my dad a nebuliser a few weeks back and he takes his salbutamol through it, so may get him to try this also.

Do you use a mask or nose cannula?

It’s an ongoing adventure this.

My Dad has started his Nintendanib, low dose morphine, Azithromycin and nebulised salbutamol. Side effects weren’t as expected to be honest, constipation caused by the morphine, nausea and a really bad cough.

After 2 weeks he developed an infection that floored him for a week and after doxycycline he’s much better, but still nauseous, mad hot flushes and then head freezes. He’s constantly tired but the infection was bacterial so believe it could take a few weeks.

Is this anything like your experiences?

Littlepom profile image
Littlepom in reply to Italia

The isotonic saline is 0.9%. Hypertonic is much stronger 3,5,7 or 9%. It used to be that it was only recommended for copd but was then used in bronch also. It has to be tried in hospital in case there is a reaction but isotonic does not need to be. I tried 5 and 7% hypertonic which I bought on the internet. For me it dehydrated me and did not work anywhere as well as the more gentle isotonic. We are all different and have to find what suits us and works best. I only use a simple mouthpiece on my nebuluser. Your Dad has a lot of problems co existing side by side and you do not say whether he has copd which is very different to bronchiectasis which I have.

Italia profile image
Italia in reply to Littlepom

Hi Littlepom, he has COPD and IPF.

He’s just been stopped taking Nintendanib as he’s been affected by some side effects effects. After 2 weeks and blood tests they may prescribe a lower dose.

He hasn’t tried the isotonic saline yet as he’s waiting for all his side effects to wear off.

Hoping he finds his right balance soon xx

Daffodil77 profile image
Daffodil77 in reply to Littlepom

Hi I googled Nacsys but its not good for people with stomach ulcers. Ive had stomach ulcers when I have antibiotics for chest infection. I get acid reflux & had to give up spices for about a month. Then I slowly introduce them again in my diet, can't live without spices 😂

Littlepom profile image
Littlepom in reply to Daffodil77

I looked at nacsys and decided against it. I would rather nebulise than take stuff

peege profile image

I too have taken it for years with no problem. Some patients are prescribed NAC -AcetelineCystiene to do the same job. Can also be purchased over the counter in health food shops. Perhaps your GP would prescribe it to give it a try.

Lfcpremier profile image

I did move to a different brand of Carbocisteine as I thought it was affecting my stomach. OK for 12 yrs on it.

Digger0 profile image

I have had the solution in pre packaged sachets for over 2 years with no effects. Maybe try the sachets?

B0xermad profile image

Hi I took carbocysteine for 6yrs they affected my stomach but 2yrs ago the doctor changed me to nacsys 600mg effervescent tablets (acetylcysteine)once a day and its been a revelation

SChatt54 profile image

I have been taking 2 carbocisteine capsules 375mg three times a day for years my temperature is on low side too but never thought anything about it mentioned it other than that no issues at all

Daffodil77 profile image
Daffodil77 in reply to SChatt54

Yes it made my blood sugar low too, not that I'm diabetic, but it runs in my family. I was craving sweet things in the beginning because I was light headed, but then I got used to the low blood sugar feeling.

Kanafapot profile image

Post my lobectomy I was prescribed Carbocisteine to help clear mucus and make coughing easier. I felt quite nauseous most of the time and suffered with diarrhoea, even tough I was on morphine at the time. When I got home I read the leaflet inside the box and found that these were some of the side effects. I spoke to my GP and she advised me to stop taking it. I didn’t need any other meds in replacement.

It really upset my intestines together with the antibiotics. It’s taken me 8 months to get back to something like normal, so you’re not alone in having side effects.

Daffodil77 profile image
Daffodil77 in reply to Kanafapot

I forgot to mention In my post that carbocisteine made me constipated & due to this I got gas pain under my chest on left side & it lasted for a good few days especially at night. I just kept all of this to myself. I didn't think it was the carbocisteine. The pain then started happening in my left arm & then I told my sister. she told me to have omeprazole, so I took two & within a few hours the chest tightness was gone. & the doctor gave me senna, but the omeprazole was doing the job. After this, all the other symptoms arised. They were acute but now they seemed to be making me unwell. In the beginning I used to feel that my tongue is dry & my blood sugar is Low but I put up with it. Eventually I lost half a stone which is 7lbs. My sister noticed that I'm not eating properly & then I decided to stop the carbocisteine. I wanted them to work but there was so many side effects. I didn't realise that I had lost my appetite. I was just focused on the one benefit of carbocisteine. Sorry about the rant 😂. I feel much better now though after stopping it.

Cornishman1966 profile image

I had hives, lught-headedness and unbearably itchy skin from both the syrup and the capsules. My GP told me it would actually be dangerous to continue. As yet, I've not been told of any alternative. So I'm relying on twice daily breathing exercises and drinking plenty of fluid.

JetJet profile image
JetJet in reply to Cornishman1966

NACYSS was the alternative my Mum was given

JetJet profile image
JetJet in reply to JetJet

She had the same reaction as you

Daffodil77 profile image
Daffodil77 in reply to JetJet

I will talk to my gp thank you 😊

JJ_7 profile image

Hi Daffodil. I have been on Carbocisteine, Saline 0.9%, and salbutamol nebuliser solution 1mg/ml for a few years. Carbocisteine is one of a number of mucolytics and it will be worth discussing the other mucolytics with your GP. I have had no major problems with Carbo but it does give the runs from every where ;) I will leave out the details :) Some of your other symptoms may not be caused by Carbo so it is important to see your GP. I hope you can sort out your difficulty xxx

Daffodil77 profile image
Daffodil77 in reply to JJ_7

Thankyou 😊

ritapeeps profile image

I have ipratropium & salbutamol together in my neb & then saline after 3 times a day & salbutamol on its own once a day i also have Carbocisteine twice a day plus omeprazole in the morning i also have Azithromycin 3 times a week for life, i used to have really bad mucus & it has now stopped, through all the meds so i am glad of that. Rita

JetJet profile image
JetJet in reply to ritapeeps

What does the omeprazole do?

Daffodil77 profile image
Daffodil77 in reply to JetJet

Hi omeprazole treats Indigestion, heartburn & stomach ulcers also acid reflux.

ritapeeps profile image
ritapeeps in reply to JetJet

I have really bad heartburn without them.

Daffodil77 profile image
Daffodil77 in reply to ritapeeps

May you stay healthy & happy ❤️

Timberman profile image

That's bad luck. I have been on it for 10 years with no ill effects. Started at two a day and now on four - the max I think. I recall it being a major improvement at the start so would be very worried if I had to stop. I am sure there are alternatives so I suggest you talk to your clinician about it.

Lee_Scoresby profile image

No side effects for me at all. Are you sure that yours didn’t just occur at the same time you started CS? From another source/cause?

Daffodil77 profile image

I always have low blood pressure & low temperature normally but this time I couldn't control it. The weather hasn't helped, it's been snowing on & off. I'll have to speak to my doctor see what he says xx

MizB22 profile image

Wow I've not experienced that. I started taking them at a lower dose and when they helped with the mucus I stopped. Now I only take a few over a month and they still work ok 👍🏾

Daffodil77 profile image
Daffodil77 in reply to MizB22

That is really good to hear xx

Reading4everyone profile image

Hi Daffodil. It is shame that carbocistine doesn't help you. I am fine with it if I just take them twice daily. if the side effects out weigh the good effects then there isn't any point in suffering.I can't get on with azithromycin sadly but others do really well with it. best wishes Marlybee.

garibaldon profile image

Carbosisteine works great for me with zero side effects

JetJet profile image

My mother started on Carbocisteine but also felt unwell and itched all over so was stopped. She now takes NACYSS dissolvable tablet a day. I get the impression from consultant she does not believe these to be as good. Also just started using a nebuliser this week so crossing everything that this helps. Good luck.

captainchaos1 profile image

Like others, been on it for some time and have no issues whatsoever. Are you sure it's the problem? I think another chat with your GP is due. John

Medjugorje profile image

So I've been taking Carbocisteine since late December and they have been very helpful reducing the mucus especially at night. I have however the side effect is I suffer with a very dry mouth mainly in the evening. To compensate for this I use Jakeman lozenges.

Bohemianhippy profile image

Try NAC ...N Acetylcysteine . I've been taking them since Dec with no issues . It comes from the amino acid L- Cysteine. FDA approved, has many uses & definitely helps my COPD

honeysuckle78 profile image

hi , I had severe problems with carbo that went undetected for 3 months.. I’d already tried nacys but immediate problem with nausea and then a rash on legs .

Carbocysteine gradually poisoned me until my mouth and tongue was so swollen I couldn’t breathe .

Most symptoms I put down to other causes as my g.p. was sure it wasn’t that drug as I’d tolerated it at first. I didn’t think it was either at first

Had bladder and bowel problems and was exhausted .

Was told there’s no other drug so not on anything

Have newly diagnosed bronchiectasis. And terrible long Covid .

Daffodil77 profile image
Daffodil77 in reply to honeysuckle78

Sorry to hear that. My doctor told me that carbocisteine has no side effects but it clearly does. I'm trying to use my nebuliser medication separately. Can't remember who, but someone in the forum said to do that. I use the first medicine then I use Saline after 20 minutes. I do forget to do that sometimes as I'm so used to mixing them both. My bowel problem has gone since I stopped the carbocisteine so has the dry tongue. Feverish feeling & weekness has gone. I'm eating properly now.

honeysuckle78 profile image

hi , everything you breathe eat or put on skin has potential to upset your system. How crazy of your g.p.

Sounds you’ve proved it to yourself that it was that drug in particular caused severe problem. Well done

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