Bronchiestasis & Carbocisteine doseage - Lung Conditions C...

Lung Conditions Community Forum

52,223 members63,058 posts

Bronchiestasis & Carbocisteine doseage

Samye profile image
23 Replies

Hi , I am wondering if anyone can help me regarding doseage of Carbocisteine .

when I was diagnosed 6 years ago my Consultant prescribed Carbocisteine 375 mg 2 capsules

To be taken 3 times daily and when symptoms improved reduce to what I found suited best to keep under control. I found that in between exacerbation 2 capsules twice daily proved effective.

However, after 6 years I am now having a problem when trying to order a repeat script,

As Dr says I should now only be taking 1 capsules three times a day, and I am having trouble trying to explain that if I reduce to this low dose I will get a build up in my lungs.

They don’t seem to understand that this is a life long condition that does not get better

Has anyone else come across this. I would welcome any advice. 🤗

23 Replies
Damon1864 profile image
Damon1864Volunteer

Hi Samye I have been on two tablets twice daily fothe past eleven years and I have never been to iwas having them reduced. Hope you get it sorted soon. Have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

Samye profile image
Samye in reply to Damon1864

agoHi thank you so much for your information, I really had to fight to get script which I will urgently need as I have also got dreaded covid and I’m struggling.I told them I have an 6 monthly appointment with my consultant in two weeks and that I will get him to confirm what I have told them. Very reluctantly Dr agrred to do script 🙈🙈 it’s not much fun having to fight for a script feeling like I do at moment 🤗

,

Littlepom profile image
Littlepom in reply to Samye

Do make sure that you tell your con that the GPs are being difficult with you and ask them to write specifically on this subject. Also make sure that you get a copy of the letter so that you can put it under the GPs nose if they are difficult again. Consultants really do not like GPs going against their instructions. I'm so sorry. None of us need this kind of nonsense when we struggle every day as it is.

Samye profile image
Samye in reply to Littlepom

Thank you Littlepom, I certainly will I have my 6 monthly face to face appointment with my Consultant next Wednesday but I am not sure I will be able to attend the way I feel with dreaded covid, I have tried ringing his secretary but she is not in office today , surprise surprise 🙈😂😂🤗

Littlepom profile image
Littlepom in reply to Samye

Keep trying. Maybe your con can phone you instead of face to face. I hope that you will be feeling better soon.

Samye profile image
Samye in reply to Littlepom

I will keep trying, thank you 🤗

teddyd profile image
teddyd

Been on carbosistene 375mg for a long time probably since diagnosed with Bronchietasis. My dosage is 2 morning and night, increased to 2x3 times a day when my lungs are not behaving themselves.

It is left to my discretion when the 6 tablets a day are required .

It has never been suggested or adviced to go below 4 per day.

I thought that was the recommended dose. I am sure someone with Bronchietasis will come along with their advice and experience.

Samye profile image
Samye in reply to teddyd

Hi Teddy, thank you so much for your information, I really had to fight to get script which I will urgently need as I have also got dreaded covid and I’m struggling.I told them I have an 6 monthly appointment with my consultant in two weeks and that I will get him to confirm what I have told them. Very reluctantly Dr agrred to do script 🙈🙈 it’s not much fun having to fight for a script feeling like I do at moment. 🤗

teddyd profile image
teddyd in reply to Samye

You should not have to fight to get the right medication. Hopefully the consultant will confirm with your GP the correct dosage. I hope you make a speedy recovery. XX

B0xermad profile image
B0xermad

Hi I was on them 3 times Daily 2 tablets but reduced myself down to 1 tablet 3 x Daily but upped the clearance with a device and now changed to nacsys 600mg effervescent tablets once a day and its a revelation no more sticky lungs mid afternoon

Izb1 profile image
Izb1

For the last few years I have had really bad sinus problems and all the mucus used to get trapped in my nose until I had a sinus op which helped to stop that, so haven't needed carbocisteine until recently. Just before i went on holiday I could feel my chest getting bad with a build up so requested these on my script, only for it to be refused. When I called I then had to wait a week for a reply from the pharmacist ( not the doctor) and almost had an aurgument to get them. This took another week by then I had started with an exacerbation and needed antibiotics, same argument as he gave me a week not two, which us bronchs need. This is all because my doctor is on mat leave, I really despair with what we have to cope with. Get your consultant to write to your gp and stop this happening again x

Patk1 profile image
Patk1

Im prescribed 2x2 daily,after starting on 3x2 as u were.Dpeak to another dr or respiratory nurse at surgery

Read the enc leaflet in with pills so u can give thm correct info.alternatively,ask pharmacist to ring drs for u.

Shrimpy-13-22-25 profile image
Shrimpy-13-22-25

Hi, that seems a very strange thing for your doctor to do. Like many others I take 6 daily. Perhaps there’s the recommended dosage use on a nhs website or NICE that states the recommended dose, or even BLF can help. Hope all goes well for you

Nula2 profile image
Nula2

Hi Samye, Why is your GP putting you through this added stress!? Your consultant advised the correct amount that should be enough evidence surely. I've been on carbocisteine on repeat prescription for about three years and my GP has never questioned it. Hope its sorted soon Take care 👋

Otto11 profile image
Otto11

Hi I would have thought your GP could see from one of your clinic letters which should have your correct dose on them. I’m prescribed 2 twice daily. I havnt been seen since diagnosis over 2 years ago just before lockdown but as I only have mild Bronchiectasis the consultant did a phone consultation & said I could change to 1 twice daily if I felt ok. I now have surplus as my prescription is for 4 daily. I do hope you manage to get it sorted x

Samye profile image
Samye in reply to Otto11

Thank you 🤗

busygardener profile image
busygardener

like yourself i was confused with carbocisteine doseage,was prescribed it with no instructions .I then spoke to a pharmacist who was very helpful,at present im only taking 2 tablets am ,my mucous is like thick gravy ( lovely description) however once i start struggling i increase to 3 times a day .I am also taking daily antihistamine at present and beconase nasal spray which have really helped.Good luck i understand your frustration x

Samye profile image
Samye in reply to busygardener

Hi Busygardener, Thank you for replying.

What I can’t understand is that for past 6 years I have been taking medication as told by my Consultant and as per instructions in with medication and have kept things more or less under control, and now my Dr has suddenly decided I am taking too much🙈🙈 even though I told them I have now got Covid.🤗

MoyB profile image
MoyB

Your post has yielded some really interesting replies. I, too, am a little bit confused about how much Carbosistein I should take.

For a long time I was taking 2 x 3 times a day. The RESP nurse knew this and said that it was fine for me to still be taking that dosage but to drop the dosage down or up, as I felt I needed to.

I recently had a private consultation with a resp physio who asked me about all the meds I was taking. She was concerned that I was continuing to take the carbosisteine. Her reasoning was that all medication has side effects. She told me that the carbosisteine is to be taken as and when needed, and not all the time.

As a result of her concern, I have cut down the amount gradually and I'm currently not taking any at all. I enjoy the fact that I have fewer meds to fit into the day, but I'm starting to feel that I need them again.

As I was doing fine on 6 a day, I may go back to that for a while as I can feel the mucous starting to build up again. Has anyone else been told the same thing ie they are not meant to be taken as a regular medication?

I think this may be incorrect.

I could kick myself for not raising it with my consultant when I saw him on July 4th as it was he who prescribed them for me in the first place and I was certainly of the impression that I was meant to continue with them for ever.

I have no problem at all getting them prescribed. They are on my repeat prescription and my GP doesn't question it as my consultant advised that I take them.

I think it's quite shocking that your GP isn't willing to prescribe them, to be honest. If your consultant asked for them to be prescribed, they should be the ones to change the dose, not your GP, shouldn't they? Can you speak to your consultant about it?

xx Moy

Samye profile image
Samye in reply to MoyB

Hi Moy, thanks for replying, it is interesting what you say about when you reduced the amount you started to get build up.

What I can’t understand is that for past 6 years I have been taking medication as told by my Consultant and as per instructions in with medication and have kept things more or less under control, and now my Dr has suddenly decided I am taking too much🙈🙈 even though I told them I have now got Covid.🤗

MoyB profile image
MoyB in reply to Samye

I've just found this in the NICE guidelines:

Initially 2.25 g daily in divided doses, then reduced to 1.5 g daily in divided doses, as condition improves

So it looks as though your GP has reduced your dose in accordance with the guidelines because he thinks you've improved, but you know you will get worse if you don't take them.

What would happen if you continue to take the dose you feel you need and then ask for a further prescription? Would your GP refuse? Are you able to contact your consultant and ask them to write to your GP? Or do you have contact with the Community RESP team? If so, one of the nurses might arrange for a letter to be sent.

The resp physio I saw was right that there can be some nasty side effects, but if you have never had any of them, I can't see a problem with taking the higher dose.

After checking on NICE, I've decided I will re-start my Carbosisteine as I think I feel better with them than without them, but I might try the reduced dose after all.

I sincerely hope you are able to soon get this sorted.

I hope you're recovering from the COVID now as well. I had COVID in April and found that the fatigue lingered for a few weeks after I finally tested negative but, thankfully, I don't seem to have been left with any long term deterioration in my chest condition - in fact I'm now better than I have been for a long time.

xx Moy

Alberta56 profile image
Alberta56

I've been taking 2 twice daily since I was diagnosed with bronch. Nobodyhas said anything about cutting thr dose down.

Samye profile image
Samye in reply to Alberta56

That is what I have been taking, but increasing to 6 daily when I have exacerbation , as instructed by my Consultant And it has never been queried, and then yesterday I was told I should not be taking that amount. It’s bad enough having covid and Bronchiestasis without having to fight for medication.🙈🙈🤷‍♀️🤷‍♀️Take care

🤗

You may also like...