Pulmonary fibrosis

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as member Bryan explains in this video.

What is pulmonary fibrosis?

Pulmonary fibrosis is a chronic, progressive fibrosing interstitial pneumonia of unknown cause and results in the lungs becoming thick and stiff, or scarred, over time. PF may be caused by medications, exposures, or underlying diseases of the autoimmune system.

Common symptoms reported by people with pulmonary fibrosis

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
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Treatments taken by people for pulmonary fibrosis

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)
Type
Prescription Drug
How many have tried
227
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
8
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
47
Treatment name(s)
Type
Physical Therapy
How many have tried
126
Treatment name(s)

(Prednisone Intensol)
Type
Prescription Drug
How many have tried
89
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
42
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Supplement
How many have tried
61
Treatment name(s)

(Cytoxan)
Type
Prescription Drug
How many have tried
2

Data from patients with pulmonary fibrosis, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
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Compare treatments taken by people with pulmonary fibrosis

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (109 evaluations)
Side effects
dry nose nosebleeds (epistaxis) 17 more
Total evaluations
112
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (96 evaluations)
Side effects
diarrhea nausea 42 more
Total evaluations
95
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (68 evaluations)
Side effects
nausea abdominal pain 45 more
Total evaluations
70
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (21 evaluations)
Side effects
muscle pain nausea during and after eating 1 more
Total evaluations
22
Treatment name(s)

(Prednisone Intensol)
Perceived effectiveness
for idiopathic pulmonary fibrosis (9 evaluations)
Side effects
weight gain blood sugar swings 6 more
Total evaluations
14
Treatment name(s)

(Imuran)
Perceived effectiveness
for idiopathic pulmonary fibrosis (2 evaluations)
Side effects
chest tightness decreased appetite 1 more
Total evaluations
5
Treatment name(s)

(GNC N-Acetyl Cysteine)
Perceived effectiveness
for idiopathic pulmonary fibrosis (2 evaluations)
Side effects
Total evaluations
2
Treatment name(s)

(Cytoxan)
Perceived effectiveness
for hypersensitivity pneumonitis (1 evaluation)
Side effects
upset stomach
Total evaluations
1
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with pulmonary fibrosis, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
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Who has pulmonary fibrosis on PatientsLikeMe?

  • 8 new patients joined this month
  • 7216 say PF is their primary condition

Age
Age Proportion # of patients
<20 7
20s 98
30s 277
40s 618
50s 1103
60s 1839
70+ 3930
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 18
20-29 years 28
30-39 years 65
40-49 years 182
50-59 years 398
60-69 years 447
70+ years 255

Distribution of sex

Sex
Sex Proportion # of patients
Male 3503
Female 4526

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 2078
Not Diagnosed 144

These charts show data from PF patients who have completed their condition history
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