Pirfenidone User Reviews & Ratings

• JSP
• Taken for 5 to 10 years
• April 19, 2023

Esbriet (pirfenidone) for Idiopathic Pulmonary Fibrosis "Have been taking Esbriet since 2017 so a bit over 5 years. Overall I have been stable with regard to liver panel results. I have lost some 40 pounds during that time and do experience fatigue constantly. I also have arthritic knees so I do experience pain daily but not sure there has been any worsening or correlation to Esbriet. Bathroom habits seem to change all the time…sometimes can hardly get there in time while others it seems a struggle to complete the task. My cough has worsened, getting up in the morning I spend the first hours coughing and trying to clear things out. Cold air will trigger coughing spells so I find I need to wear a mask if out walking the dog or out in the yard. When I was first diagnosed I was told the average mortality was 2-5 years and I am in year 6 and overall still feeling pretty good. My pulmonologist feels the Esbriet has been helpful in slowing down the progress."

• kcmac
• Taken for 1 to 6 months
• April 18, 2024

For Idiopathic Pulmonary Fibrosis "I've recently been diagnosed with IPF. I also started taking pirfenidone this past December. I slowly increased the dosage until currently taking 801mg tablets 3 times daily with food. I cannot tell if my condition has improved as I've been told the pirfenidone does not improve my condition except to delay the disease from worsening. I do have some stomach issues (constipation etc.) since starting the medication and am alert to worsening headaches over the last month or so."

• donut
• Taken for 1 to 6 months
• January 24, 2021

Esbriet (pirfenidone) for Idiopathic Pulmonary Fibrosis "I was on perfenidone for 6 months. Terrible side effects - sunburn, constipation, loss of taste & smell leading to loss of appetite & weight. Lots of coughing tiredness & generally feeling unwell. One night I could hardly breath because of chest pain so I stopped treatment. Been off it for several weeks now & feel a lot better although still coughing a lot in cold weather. Consultation coming up so let's see the next option is."

• Amy
• Taken for 1 to 2 years
• August 30, 2023

Esbriet (pirfenidone) for Idiopathic Pulmonary Fibrosis "I was started on OFEV initially and had such horrific side effects. My Dr changed me over to Esbriet. I take 1 dose of 267mg 3 times a day and as long as I take it with my meals, I generally don't have any issues."

• Anonymous
• September 30, 2020

For Idiopathic Pulmonary Fibrosis "Delayed reaction severe sunburn rash - I was ok for several weeks then suddenly 'wow' top of my bald head & amazingly on the back of my hands which I have never protected!! fortunately there wasn't much sun (UK weather) & I wore longs. Lower abdominal pain - dull a lot of the time - severe occasionally. Moderate Constipation. Moderate tiredness & weight loss Can't believe I might have to take this stuff permanently"

• tom...
• Taken for 1 to 6 months
• July 28, 2023

Esbriet (pirfenidone) for Idiopathic Pulmonary Fibrosis "Diagnosed with IPF on 10/03/2018. I had been on Ofev in reducing dosages for about 1.5 years. Side effects were horrendous for me. Mostly lower GI. Constant projectile diarrhea... (sorry for that description but completely accurate). Switched to Esbriet (Pirfenidone) 267mg. Followed weekly increasing dosages: 1 pill 3 times daily, then 2 pills 3 times daily, and finally 3 pills 3 times daily. From the beginning I have had no real side effects. I have been staying out of the sun almost daily since some of my heart meds suggest avoiding sunlight (supplementing daily D3, 2000IU). Keeping a close eye on liver levels. Saw a slight increase which if it remains steady will be of little concern. Seems like I am able to tolerate slightly more activity, at times, with O2 levels in low 90's. That is not always the case. Experiencing weight gain! Where is the weight loss side effect they mentioned? and... I am tired most of the time. This has improved somewhat since changing to Esbriet."

• Lyn...
• Taken for 2 to 5 years
• June 29, 2023

Esbriet (pirfenidone) for Idiopathic Pulmonary Fibrosis "Started on three, 3 times daily. Had side effects, so my doctor put me on two, 3 times daily. Lost lots of weight. Still find it hard to sleep and meal size is down to a small plate. But scans show medicine working at slowing scarring."

• Jim
• Taken for 6 months to 1 year
• June 3, 2023

Esbriet (pirfenidone) for Idiopathic Pulmonary Fibrosis "I have been on this drug for 6 months, I have not noticed any benefits. I live in the south and enjoy the outdoors but I cannot go out with out completely covering my skin. I break out in a very itchy rash, my skin turns a bright red, I bruise very easy, and my body temp is usually around 99.4"

• Anonymous
• Taken for 1 to 6 months
• August 1, 2020

Esbriet (pirfenidone) for Idiopathic Pulmonary Fibrosis "On Esbriet my side effects were constant headaches Runny nose Sneezing Sore throat Constipation Bloating Nausea Not worth the money"

• R Wal...
• Taken for less than 1 month
• April 4, 2024

For Idiopathic Pulmonary Fibrosis "Taking pirfenidone 534mg, experiencing daytime fatigue, sleepiness, and started lower back pain."

• frh
• Taken for 2 to 5 years
• December 3, 2023

Esbriet (pirfenidone) for Idiopathic Pulmonary Fibrosis "It has slowed the progression of the disease. I have experienced body ache, tiredness, occasional diarrhea. I have not lost a significant amount of weight."

• cat...
• Taken for 2 to 5 years
• July 6, 2021

Esbriet (pirfenidone) for Idiopathic Pulmonary Fibrosis "No side effects doing great cutting dose in half may go off completely if next CT can is great"

• Anonymous
• March 4, 2024

For Idiopathic Pulmonary Fibrosis "Tolerated very well, very light side effects of nausea."