Acetyl cysteine for IPF

[sunnyday22]

Is anyone taking Acetylcysteine. What are the side affects.

[Gidge]

Hi there - my husand takes Mucodyne, which is carbocysteine, to keep mucous more runny . I know the americans seem to like Acetylcisteine - my undestanding is it does mucht he same thing. keith's had no side effects taht we know of. Hope you are bing assessed for Pirfenadone , Pulmonary Rehab & and oxygen if you have IPF......that's what is recommended in the new guidelines issued by NICE in June. Gill

[sunnyday22]

Thanks for your reply. I have other health problems but I am not sure why I am not being offered Pirfenadone. That's a question I will be asking at my next meeting.

[Sooki]

Yes I take this,3 times a day,no bad effects,I have IPF and emphysema .I am also on my second week of pirfenidone,so far so good.Also have just started rehab,and I am going to start ambulatory oxygen.

[DozyDormouse]

I take acetyl cysteine 3 x a day as well, with no ill effects. As far as I was aware though it is an aid to prevent inflammation and did a different job to carbocysteine. I only have the fibrosis and have no mucus to speak of so wouldn't need a thinner. You can buy NAC from Holland and Barratt, I believe it's used in body building? Please do not take this as fact, The uses that is as I was in ICU when it was all explained to me. regards Dozy

[sunnyday22]

Thank you all for your replies. I have had IPF for a while with no medication but it now seems that the time has come when I now need it and I want to make sure that I can be part of any decision and not just told what I need.

[peege]

Hello Sunny, it might be a good idea to contact the blf helpline for the best and latest advice? Open office hours on weekdays. Click on red balloon for details. P

[maggie44]

Hi

I take acetylcysteine 3 times per day with no apparent side effects. It is one third of a three pronged system with steroids and azathioprine. As far as I am aware it is to reduce chance of inflammation. I was under the impression that people with Idiopathic Pulmonary Fibrosis are not given this medication now, but it is used for people like me where the source of the PF is known. I am categorised as having Non specific interstitial pneumonitis (NSIP).

maggie

[DozyDormouse in reply to maggie44]

Snap, the exact meds I am on - I am categorised as having Interstitial Lung Disease, Respiratory Failure. regards Dozy

[sunnyday22]

Thanks for all your reply's it is all good information for my next appointment