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)

(transtracheal oxygen)
Type
Prescription Drug
How many have tried
230
Treatment name(s)

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

(Esbriet)
Type
Prescription Drug
How many have tried
49
Tried for
idiopathic pulmonary fibrosis (21) asbestosis (1)
1 more
Treatment name(s)

(Prednisone Intensol)
Type
Prescription Drug
How many have tried
88
Treatment name(s)
Type
Physical Therapy
How many have tried
128
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
62

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)

(transtracheal oxygen)
Perceived effectiveness
for idiopathic pulmonary fibrosis (15 evaluations)
Side effects
dry nasal passages nosebleeds (epistaxis) 1 more
Total evaluations
15
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (33 evaluations)
Side effects
diarrhea stomach pain 15 more
Total evaluations
33
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (30 evaluations)
Side effects
nausea dizziness with hypotension upon standing 11 more
Total evaluations
30
Tried for
idiopathic pulmonary fibrosis (21) asbestosis (1)
1 more
Treatment name(s)

(Prednisone Intensol)
Perceived effectiveness
for idiopathic pulmonary fibrosis (2 evaluations)
Side effects
blurry vision weight gain
Total evaluations
5
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (1 evaluation)
Side effects
Total evaluations
2
Treatment name(s)

(Imuran)
Perceived effectiveness
for idiopathic pulmonary fibrosis (1 evaluation)
Side effects
chest tightness
Total evaluations
1
Treatment name(s)

(GNC N-Acetyl Cysteine)
Perceived effectiveness
for idiopathic pulmonary fibrosis (1 evaluation)
Side effects
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?

  • 5 new patients joined this month
  • 7303 say PF is their primary condition

Age
Age Proportion # of patients
<20 6
20s 61
30s 252
40s 574
50s 1043
60s 1702
70+ 4316
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 399
60-69 years 449
70+ years 255

Distribution of sex

Sex
Sex Proportion # of patients
Male 3537
Female 4571

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 2080
Not Diagnosed 143

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