Pulmonary Fribrosis - Carbocistine

[sylvnan]

Hi Everyone, Need some friendly advice/views. I have IPF and was diagnosed approximately 15 years ago. Apart from the usual bouts of chest infections and Pneumonia etc. manage to keep everything under control (sort of). The last chest infection in August this year has left me with a terrible "chesty" cough, which is very reluctant to go away, and it sounds awful and wears me out, literally. The last visit to my Chest Specialist resulted in me being put on a "maintenance course" of antibiotics (Doxycycline 100mg daily) and Carbocistine 375mg three times a day. I do think the Carbocistine help the "chesty rattle" when I cough, but i am still bringing up an awful lot of phlegm. I am wondering has anyone else experienced the effects of this drug. I am wondering what it actually does!! I am on quite an extensive amount of medication, as I also have Rheumatoid Arthritis and Osteoporosis. By the way I am 76 years old. Would love to hear from anyone with views or opinions. Thanks.

[2greys]

Hi sylvnan. Carbocisteine does not actually create the mucus, it is to thin down the mucus so that you can bring it up and get rid of it. Without the Carbocisteine there is a big risk that it will remain thick, get stuck down in your lungs and harbour bacteria that can then develop into a serious infection.

[xNellx]

I’m 33 and just been started on Carbocisteine daily it thins mucus. You’ll still have a rattle I think; if anything you will probably bring more up.

Hope this helps.

xNellx

[Hidden]

The more I read posts it sure seems rheumatoid arthritis and Lund disease go together. Ten years ago it seems like I just went to bed one night and woke with severe pain in my hip joints. Literally had to pick my legs up to get in and out of vehicle. Went to dr. Who sent me to a rheumatologist who prescribed me methotrexate. Four weeks later I was struggling with shortness of breath. Quit the methotrexate and went to see a lung specialist. Got a cat scan. Three weeks later they told me I had alpha one antitrypsin disease alelle ZZ. So one day I was fine the next I had a genetic lung disease, arthritis severe and developed osteoporosis.

[Patchpoppy2]

Hi sylvnan. I too take carbocistine. I was advised that it was mucas thinning drug. I cough a lot... have asthma and bronchiectasis, it does help release the mucas, buy as far as I know that's it purpose. Lungs would be a lot more congested without it. Preservere with them.

[sylvnan]

Thanks everyone for responding to my post, I will keep on with the Carbocisteine as you all seem to know from experience that it will help, it's just that I find it disturbing bringing up all this "gunk", but if it is helping the condition I will defo press on ! Thank you all.

[Barry379]

Hi all

This is my first attempt at the web site

Have had IPF for the last 10 years or so and am about to start a course of OFEV does any body have have any experience of this drug ?

I also have arthritis in my knee am 75 years old so appear to have very similar symptoms as Sylvnan

Would love to hear from anyone

Barry379

[simbanine]

Hi Sylvnan and Barry379

I too am mid 70's and have had IPF for about 9 years being described as a slow burner so you 2 must be smoulderers. They tried OFEV on me but I could not take the side effects, but that does not mean you won't be 100% with it - many people are and "nothing ventured,,,,,,,,,", so at least give it a try. As for the persistant cough I have been told to just live with it; annoying thing was I did everything possible to avoid infections and was clear for a year, then picked it up on the bus back from the hospital in March! Luckily, I have avoided pneumonia which is possibly because I had the jab 10 years ago which at the time I had understood gave a lifetime immunity. However what I don't understand is, were this to be the case why don't we all get the jab? I also read that it should be renewed every 10 years so asked the hospital who advised to have a blood test to see if I need a booster. I am awaiting the result of that.

[Izb1]

Hi sylvnan, I have bronchiectasis and rheumatoid arthritis, I refused methotrexate and they discharged me so look after myself now. My last doctor told me that she would keep her eye on my lungs as people with ra are prone to lung problems. I was fine until last December after having a bad cold and now have problems clearing mucus, I do find the mucodyne good as they help to thin this out. I am at the moment on a six weeks low dosage doxycycline 50mg once oer day, to clear up the infection in my sinus's , fingers crossed this will work. I am not sure if this ab has started my cough off again and cant say if this is doing anything. I have found it difficult to find an inhaler that works, but seretide seems to help if I get too breathless and rattly. I try to keep off everything when feeling well. I am 66 and until last year managed fine, so think this maybe progressive. Hope things work out ok for you. Irene x