Experiences with

Pirfenidone

Just received a letter from hospital telling me they are now using a cheaper manufacturer of Pirfenidone as the Roche licence has expired. We can only pray the cheaper version is as effective. 🙏🙏

I have been told I might be able to start on Pirfenidone if my liver settles down in a few weeks or so. Has anyone else had this and how have you found to side effects of Pirfenidone. Many thanks Hazel

She's about to start on Pirfenidone, finally! Took forever to get insurance to approve it. I'll keep you posted on how it goes. We are all taking a 2 week cruise to Hawaii in a month (my husband's 93 year old Dad as well), so we hope she's adjusted to the drug by then. (You only live once.)

I’ve been on Nintedanib for some time now but may be offered a switch to Pirfenidone when I next speak to my consultant. Has anyone had any side effects from Pirfenidone & how bad are they?

Anyone with experience of taking Pirfenidone have any advice on the side effects?

APO-Mycophenolate, Esbriet (Pirfenidone), or Ofev (nintedanib). I unfortunately eat grapefruit for breakfast! Taking mycophenolate during a pandemic, seems foolhardy, and who is to say when the next pandemic will occur. I have a choice NOT to take this drug.

Anyway, starting the Nintedinab soon as i opted for this over the Pirfenidone for various reasons but mainly due to the skin photosensitivity risk as this once ginger bap ( now white) only has to say the word Sun and i’m like a beetroot.

i have ipf and is about to start taking pirfenidone can you get sun screen on priscription

Have just had my Pirfenidone delivered, I seem to recall a nurse telling me that I have to use factor 50 sun protector because of skin sensitivity. Anyone have any advice on this. Max

Have just been prescribed this drug for my copd/fibrosis has anyone tried it? Thanks Max

Have now been prescribed pirfenidone anyone tried this and has it helped?

Which drug is best tolerated for IPF, Pirfenidone or Nintedanib ? Any comments or personal experiences?

Has anyone been prescribed Pirfenidone and if so what was the impact of the medication?

He was on a clinical trial of Pirfenidone pills (9 per day) and Alimta/Carbo, then down to Pirfenidone and Alimta maintenance for stable disease.

Am due to start Pirfenidone in next few days. Is anyone else taking it? How are you finding it? My head is all over the place too. I am becoming quite panicky, waking during night feeling like I am suffocating but really imagining it. How do you guys cope? Any advice gratefully received. H.

Stay on chemo and stable or stay on chemo and radiate all 4 tumor sites and gamble that it just may work in his favor for NED in the long run and come off Pirfenidone in clinical trial. Any help would be most appreciated!!!

Prior to this recent setback, he was noticing aggravated SOB within hours of taking the Pirfenidone, which he takes 3 pills 3 x a day. Pirfenidone may be helping the chemo (oncologist said it works as a form of immunotherapy) or hurting his lungs and SOB - we just don’t know what’s happening.

Hi, can anyone help with the following :- Has anyone experienced bad side affects with pirfenidone, Really bad fatigue, could not increase medication as it put me to my bed.

Unable to take Pirfenidone due to it causing sickness,so tried Nintedanib at 100mg ok for a week then sickness again,don't what to do.I feel that the way the medicine makes me feel that it's not worth continuing with them anymore,and I should just try to get on with life.Has anyone had the same problem

CanI ask if anyone is taking Pirfendone for IPF, and if so, how soon does one begin to feel any improvement ? Thank you Wendy.