Interstitial Lung disease treatment

[ProudYorky]

Hi everyone hope your all well I have a question for those of you who suffer with scarring of the lungs .I saw my consultant yesterday and unfortunately my scaring has progressed further since my first scan in 2019 when I was diagnosed with ILD .He is putting me forward to a committee of lung specialist at Jimmy's in Leeds to see if I can go on a program where I can take Nintedanib to slow the progression down , if the committee (which he luckily is part of ) think I'm a suitable candidate my question is has anyone else been on this and did you manage with the side effects . My consultant who has been excellent over the past 5 years with my treatment says if I get the ok it will be worth putting up any side effects to prolong my life span

[helenlw7]

My brother has IPF and has been on Nintedanib for about 2 years. He has lost a lot of weight, mainly because the medication affects his appetite and how he tastes food, in his opinion well worth putting up with to extend his life. I was diagnosed with ILD last year but have yet to see a consistent about it.

[Haggisgirl]

I’ve been taking Ofev for 6 months and so far so good , maybe I’m one of the lucky ones no side effects .. wishing you all the bestb

[ProudYorky in reply to Haggisgirl]

Thank you that's good to hear 😊

[bwp91]

Why not talk to the helpline on Action for PF?