Pirfenidone 801mg Tablets: My Experience and Questions for the IPF Community
Great to hear that Pirfenidone helps slow down the scarring process in your lungs. I've been taking it for months. Has anyone else had any unusual side effects — besides the ones listed in the package insert? I've heard some people complain about sunburn more than usual. I've also had a few headaches, but I'm taking it with some NSAID tablets, which at least helps with the pain. The most troubling side effect for me is feeling dizzy, which I've noticed more often than usual when I work out. I'm curious to know if anyone else has noticed this. What else do people take along with Pirfenidone? Does anyone have any tips for managing side effects or improving the overall experience? I'm just looking for a little more information and support out there.
My biggest takeaway has been to regularly monitor liver function. Some of these side effects can be very serious. If you're feeling sick — and I mean really sick — get it checked out right away.
I had a bad reaction to the meds initially, but I stuck with it and it's been okay. I suggest trying it out if you're thinking about it, but be cautious with side effects and discuss them with your doctor.
I've been on Pirfenidone for a while and haven't had any issues with sunburn. I take it with a meal and drink a lot of water. It's been a bit tough, but it feels like the benefits outweigh the side effects.
I've had to be careful with sun exposure. I always wear sunscreen and a hat when I'm outdoors. I've been fine so far.
I started Pirfenidone and it's been a journey. I've had some bad skin rashes and needed a topical treatment. Otherwise, it's been okay. But yeah, the sun sensitivity is real.
I've been feeling extremely tired lately, I wonder if that's a side effect?
I've noticed the taste change and diarrhea. Not sure if that's due to the meds. I avoid dairy and take some probiotics, and that seems to manage the GI distress.