What is Pirfenidone?

Category: Prescription Drugs

Most popular types: Esbriet Pirfenex IPF Phase III ASCEND (pirfenidone) Show all

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Pirfenidone is an oral medication used for the treatment of idiopathic pulmonary fibrosis (IPF). The exact way this drug works is not yet fully understood, but it is believed to help fight the fibrosis and inflammation that lead to the progression of IPF.

Reported purpose & perceived effectiveness
Purpose Patients Evaluations Perceived Effectiveness
Idiopathic Pulmonary Fibrosis 301 182
Pulmonary fibrosis 19 22
Feels like I am suffocating 1 0
Participate in clinical trial 1 0
Support immune health 1 0
Venous Insufficiency 1 0

  • Major
  • Moderate
  • Slight
  • None
  • Can't tell

Side effects

Side effects as an overall problem

Side effects as an overall problem
Severity Evaluations
Severe 33
Moderate 41
Mild 77
None 35

Commonly reported side effects and conditions associated with Pirfenidone

Side effect Patients
Decreased appetite 114
Indigestion 97
Nausea 96
Sensitivity to sunlight 87
Headaches 73
Abdominal pain 69

Show all 71 reported side effects

Dosages

Based on patients currently taking Pirfenidone

Dosage Patients
801 mg three times daily 45
267 mg three times daily 21
534 mg three times daily 13
2,403 mg daily 5
801 mg daily 3
267 mg daily 2
200 mg three times daily 2
800 mg three times daily 2
2,403 mg three times daily 2
71,289 mg three times daily 2

See all 14 dosages

Why patients stopped taking Pirfenidone

Multiple reasons could be selected

Reason Patients
Side effects too severe 24
Doctor's advice 12
Did not seem to work 6
Other 3
Course of treatment ended 1
See all 33 patients who’ve stopped taking Pirfenidone

Duration

Currently taking Pirfenidone

Duration Patients
Less than 1 month 3
1 - 6 months 7
6 months - 1 year 9
1 - 2 years 26
2 - 5 years 52
5 - 10 years 1
10 years or more 1

Stopped taking Pirfenidone

Duration Patients
Less than 1 month 4
1 - 6 months 12
6 months - 1 year 7
1 - 2 years 9
2 - 5 years 1
Adherence
Adherence Evaluations
Always 139
Usually 27
Sometimes 4
Never taken as prescribed 16
Burden
Burden Evaluations
Very hard to take 17
Somewhat hard to take 41
A little hard to take 51
Not at all hard to take 77
Cost per month
Cost per month Evaluations
$200+ 26
$100-199 3
$50-99 3
$25-49 9
< $25 73
Not specified 72

What people switch to and from

Patients started taking Pirfenidone after stopping:

Treatment Patients
Nintedanib (Ofev) 9
Acetylcysteine (Mucinac) 2
Pirfenidone (Esbriet) 2
ALS Phase 2 Study Creatine/Tamoxifen Clinical Trial 1
Azathioprine (Imuran) 1

Show all 9 treatments patients report switching from

Patients stopped taking Pirfenidone and switched to:

Treatment Patients
Nintedanib (Ofev) 12
Oxygen therapy (Homozon Oxygen Therapy) 3
Pirfenidone (Esbriet) 2
Last updated:

2 patient evaluations for Pirfenidone

126 members have decided to share their profiles only with other members of PatientsLikeMe.

gagafor2
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gagafor2
Data Quality: 3 stars
  • Gender: F
  • Age: 65
PF Severity:
I am: g
I have:
Idiopathic Pulmonary Fibrosis

See gagafor2's full Pirfenidone history

Feb 3, 2017 (Started Feb 06, 2016)

  • Effectiveness
    Can’t tell (for Idiopathic Pulmonary Fibrosis)
  • Side effects
    Mild (Constant hunger, Shortness of breath with exertion, Cough)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 267 mg Three times daily
Cost: < $25 monthly

Jan 28, 2017 (Started Feb 06, 2016)

  • Effectiveness
    Can’t tell (for Idiopathic Pulmonary Fibrosis)
  • Side effects
    Mild (Constant hunger, Shortness of breath with exertion, Cough)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 267 mg Three times daily
Cost: < $25 monthly

Sep 29, 2016 (Started Feb 06, 2016)

  • Effectiveness
    Can’t tell (for Idiopathic Pulmonary Fibrosis)
  • Side effects
    Mild (Constant hunger, Shortness of breath with exertion, Cough)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 267 mg Three times daily
Advice & Tips: Set my fitness tracker to remind me to take pills. Usually half a bananna is enough food for me to take the pills in the morning
Cost: < $25 monthly

Jul 24, 2016 (Started Feb 06, 2016)

  • Effectiveness
    Can’t tell (for Idiopathic Pulmonary Fibrosis)
  • Side effects
    Moderate (Constant hunger, Shortness of breath with exertion, Cough)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 267 mg Three times daily
Cost: < $25 monthly

Feb 20, 2016 (Started Feb 06, 2016)

  • Effectiveness
    Can’t tell (for Idiopathic Pulmonary Fibrosis)
  • Side effects
    Mild (Constant hunger, Shortness of breath with exertion, Cough)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 267 mg Three times daily
Advice & Tips: I sent my fitness tracker to remind to take
Cost: < $25 monthly

  • 0 helpful marks
Mumbai
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Mumbai
Data Quality: 2 stars
  • Gender: M
  • Age: 71
PF Severity:
I am: b
I have:
Idiopathic Pulmonary Fibrosis

See Mumbai's full Pirfenidone history

May 27, 2015 (Started Nov 11, 2012)

  • Effectiveness
    Moderate (for Idiopathic Pulmonary Fibrosis)
  • Side effects
    Moderate (Exhaustion)
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 4 mg Daily
Advice & Tips: Now I take Pirfenidone 200 mg x10 tablets a day as my fibrosis spread to lower part of lung after 10 years . It started from lower part of left lung .
Cost: $200+ monthly

Oct 13, 2014 (Started Nov 11, 2012)

  • Effectiveness
    Major (for Idiopathic Pulmonary Fibrosis)
  • Side effects
    Mild (Exhaustion)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 4 mg Daily
Cost: $200+ monthly

Nov 26, 2013 (Started Nov 11, 2012)

  • Effectiveness
    Major (for Idiopathic Pulmonary Fibrosis)
  • Side effects
    Moderate (Exhaustion)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 4 mg Daily
Advice & Tips: I started with 2 tablets a day . I had headache after 10 days . I stopped for 4 days I started again. After 3 week I started 4 tablets a day . I started feeling of tiredness . I had headache after 15 days . I stopped for 3 days I started again 4 tablets . I reached level of 8 tablets with in 3 months . I do checking of liver / renal / lipid profile and RBC count every quarter . All parameters of above test gone up high in last 8 months in comparatively before start of pirfenidone . As per my medical doctor they are in safe limits.my oxygen level after 6 mts walk improved in 9 months .my Fvc is now 74 percent which was 57 percent in year 2010 .i take nutrients like nano curcumin / dry ginger / basil extract tablets and alpha lipolic acid tablets .i take 2 tablets of rabeperazole as anti acid for reflux
Cost: $200+ monthly

  • 3 helpful marks
Last updated:
Showing 2 of 2 patient evaluations for Pirfenidone