Pirfenedone and pulmonary fibrosis

[Wendywiffle80]

Hello all Im wondering if anyone can relate to my question..I have been on Pirfenedone now for over 18 mths and on the highest dose, my breathing wasnt too bad but I was on oxygene 3/4 litres on movement but since Ive been taking Pirfenedone my breathing has appeared to have gotten worse and now on 6ltrs I also pursued possible heart problems as heart condition runs in my family and I wondered if this contributed to my breathing problems yes it did and Ive just had a TAVI. now when I was in hospital and just before that I had stopped my Pirfenedone as I was having quite a lot of side effects ( and starting from the starter dose again once I came out advised by my pulmpnary team) and my breathing seemed to be much better but since Ive been taking the pirfenedone again my breathing has become more of a concern again. Im hoping this makes some sense to you as Ive tried to keep it brief but also cover whats happening, my question is has anyone else experienced this or am I imagining things.I dont want to stop the medication as my last two CT scans have shown no deterioration so they think the pirfenedone is helping but I also dont want to be so restricted in my quality of life. I have actually spoken to the doctor and he says it shouldnt affect me but Id like some feedback from people on this drug please.

[Suzie42]

Hi Wendywiffle80, I have been taking Pirfenedone for a year now and before that Nintendinab for a year, changing because of side effects. I was on maximum dose for a few months but side effects got too much and I reduced to 2 tablets 3 times a day, which I was fine on. Since Christmas I have gradually gone back to maximum dose and am fine. I have not been oxygen at all though and my lung function remains stable. Perhaps you could try reducing your dose and see what your breathing is like. It shouldn't make you more breathless I'm thinking. Take care. Jill

[Wendywiffle80 in reply to Suzie42]

thankyou so much for your reply Suzie 42 xx