pulmonary fibrosis

Hi everyone,

Intersted in hearing off anyone who has this and takes the anti fibrotic drug Nintedanib

[Hazel-mary]

Hi Mannieandfiat

I have pulmonary fibrosis and I did take nintedanib for a month, unfortunately it affected my liver so I had to stop taking it. I am now taking pirfenidone and so far so good.

I was diagnosed with PF last year and have been on pirfenidone since January.

I have a friend who is taking nintedanib and she is doing well on them.

Happy to answer and questions if I can and happy to chat anytime

Hazel xx

[Suzie42]

Hi, yes I have IPF since 2020. I started taking Nintedanib in June 2020 but after a year taking it and having so many side effects I changed to Pirefidone, like Hazel. I've been on that on and off since and have got on better with that drug although I do have tummy and bowel problems. The best thing though is my lung function has improved slightly from initial diagnosis, showing these drugs work slowing down this awful disease. How are you on Nintedanib it is meant to be slightly better than Pirefidone and also you only have to take twice a day. Very interested to know how you are getting on.

[Xrossstich]

Does it help at all? My husband as P/F and he’s on no medication at all the coughing is driving him (& me) mad!! He’s also loosing weight we think it’s down to the calories used up in coughing bouts! I’ve written to his lung specialist for advice,we wait & see!!

[Hidden in reply to Xrossstich]

Hello, I only got the medication after having a special lung biopsy called a VATS, which was very unpleasant but confirmed I had idiopathic pulmonary fibrosis which is progressive.

I can recommend a support group Which you can find by getting in touch with Action for pulmonary fibrosis and they will put you in touch with your nearest group.

I wish your husband the best and do get in touch with his consultant because there are things they can do to help.

[Hidden in reply to Hidden]

Nintedanib isn’t really a treatment but a drug to try and slow the progression down