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.
Last updated:

Treatments taken by people with pulmonary fibrosis

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)
Type
Prescription Drug
How many have tried
1,011
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
289
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
176
Treatment name(s)
Type
Physical Therapy
How many have tried
94
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Supplement
How many have tried
64
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
44
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
29
Treatment name(s)

(Albuterol Inhaler)
Type
Prescription Drug
How many have tried
15
Treatment name(s)

(VATS Lung Biopsy)
Type
Procedures
How many have tried
13
Treatment name(s)

(CellCept)
Type
Prescription Drug
How many have tried
13

Data from patients with pulmonary fibrosis, who reported starting treatments within the last 5 years.
Last updated:

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 (292 evaluations)
Side effects
dry nose nosebleeds (epistaxis) 30 more
Total evaluations
303
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (200 evaluations)
Side effects
decreased appetite sensitivity to sunlight 63 more
Total evaluations
204
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (164 evaluations)
Side effects
diarrhea decreased appetite 42 more
Total evaluations
165
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (49 evaluations)
Side effects
tiredness ankle pain (front) 11 more
Total evaluations
50
Treatment name(s)

(GNC N-Acetyl Cysteine)
Perceived effectiveness
for idiopathic pulmonary fibrosis (24 evaluations)
Side effects
heartburn hiccups (hiccoughs) when starting to eat/drink 1 more
Total evaluations
28
Treatment name(s)

(Deltasone)
Perceived effectiveness
for idiopathic pulmonary fibrosis (31 evaluations)
Side effects
weight gain abdominal bloating 35 more
Total evaluations
49
Treatment name(s)

(Imuran)
Perceived effectiveness
for idiopathic pulmonary fibrosis (8 evaluations)
Side effects
weight gain chest tightness 4 more
Total evaluations
15
Treatment name(s)

(Albuterol Inhaler)
Perceived effectiveness
for idiopathic pulmonary fibrosis (18 evaluations)
Side effects
high blood pressure (hypertension) migraine headaches 5 more
Total evaluations
22
Treatment name(s)

(VATS Lung Biopsy)
Perceived effectiveness
for idiopathic pulmonary fibrosis (5 evaluations)
Side effects
Hospitalization allergic reaction to patch adhesive 2 more
Total evaluations
7
Treatment name(s)

(CellCept)
Perceived effectiveness
for idiopathic pulmonary fibrosis (4 evaluations)
Side effects
bowel problems fatigue 4 more
Total evaluations
11
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with pulmonary fibrosis, who reported starting treatments within the last 5 years.
Last updated:

Who has pulmonary fibrosis on PatientsLikeMe?

  • 8,087 patients have this condition
  • 29 new patients joined this month
  • 6,860 say PF is their primary condition

Age
Age Proportion # of patients
<20 11
20s 110
30s 290
40s 595
50s 1,064
60s 1,897
70+ 3,190
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 18
20-29 years 24
30-39 years 63
40-49 years 178
50-59 years 392
60-69 years 446
70+ years 248

Distribution of sex

Sex
Sex Proportion # of patients
Male 3,294
Female 3,997

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 2,034
Not Diagnosed 143

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