Lung Scarring

[Dermatray15]

My doctor has recommended the medicine Ofev for my scarred lungs. Has anyone had experience with this? If so, did it make a difference?

[Suzie42]

Yes I have taken it for a year and my lung function has improved! But I have had bad side effects with it and now I am being changed to the only other drug Esbriet to see if I can tolerate it. You must give it a go, just remember to eat protein before you take it as that will lessen side effects.

[Beachballs]

Yes I take this drug and have been since 2019. It slows down the process of scaring. I have been ok on it but you have to manage it. I take it towards the end of the meal, and I make sure I stay upright for 2hours after. That sounds stupid I know , but it works for me. As regards improvement , yes there was in beginning, but have had several chest infections this year and these damage the lungs. At the moment it’s the only treatment for IPF . Good luck !! 🌸

[Mavary]

I’ve got scarring of the lung and also a pulmonary nodule. but luckily it’s stayed the same for a couple of years. I’m on Fostair inhaler which seems to control it. I keep getting checked for IPF and wondered why. I’ve just been in hospital with breathing problems that I’ve found out is caused by four fractures in my back. On my discharge sheet I noticed I have interstitial disease. I knew instantly what it implied as my Husband had IPF. Unfortunately he passed away seven years ago. I tried cutting down on my fostair but got breathless when I did.

[Mavary]

I forgot to say. They are sending me for another heart scan. I had one two or so years ago. Obviously because of the scarring.