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 with pulmonary fibrosis

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)
Type
Prescription Drug
How many have tried
693
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
242
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
182
Treatment name(s)
Type
Physical Therapy
How many have tried
52
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
25
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Supplement
How many have tried
15
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
13
Treatment name(s)

(Albuterol Inhaler)
Type
Prescription Drug
How many have tried
11
Treatment name(s)

(VATS Lung Biopsy)
Type
Procedures
How many have tried
8
Treatment name(s)

(CellCept)
Type
Prescription Drug
How many have tried
8

Data from patients with pulmonary fibrosis, who reported starting treatments within 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 (217 evaluations)
Side effects
dry nose nosebleeds (epistaxis) 25 more
Total evaluations
225
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (182 evaluations)
Side effects
decreased appetite sensitivity to sunlight 60 more
Total evaluations
186
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (168 evaluations)
Side effects
diarrhea decreased appetite 46 more
Total evaluations
167
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (35 evaluations)
Side effects
chronic cough fatigue 4 more
Total evaluations
36
Treatment name(s)

(Deltasone)
Perceived effectiveness
for idiopathic pulmonary fibrosis (18 evaluations)
Side effects
weight gain abdominal bloating 24 more
Total evaluations
33
Treatment name(s)

(GNC N-Acetyl Cysteine)
Perceived effectiveness
for idiopathic pulmonary fibrosis (4 evaluations)
Side effects
heartburn
Total evaluations
8
Treatment name(s)

(Imuran)
Perceived effectiveness
for idiopathic pulmonary fibrosis (5 evaluations)
Side effects
weight gain chest tightness 2 more
Total evaluations
11
Treatment name(s)

(Albuterol Inhaler)
Perceived effectiveness
for idiopathic pulmonary fibrosis (14 evaluations)
Side effects
high blood pressure (hypertension) migraine headaches 4 more
Total evaluations
17
Treatment name(s)

(VATS Lung Biopsy)
Perceived effectiveness
for idiopathic pulmonary fibrosis (4 evaluations)
Side effects
Hospitalization nerve pain (neuralgia) 1 more
Total evaluations
5
Treatment name(s)

(CellCept)
Perceived effectiveness
for idiopathic pulmonary fibrosis (1 evaluation)
Side effects
bowel problems fatigue 3 more
Total evaluations
8
  • 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.
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Who has pulmonary fibrosis on PatientsLikeMe?

  • 8649 patients have this condition
  • 27 new patients joined this month
  • 7038 say PF is their primary condition

Age
Age Proportion # of patients
<20 11
20s 112
30s 314
40s 671
50s 1114
60s 1899
70+ 3546
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 18
20-29 years 28
30-39 years 66
40-49 years 182
50-59 years 395
60-69 years 451
70+ years 248

Distribution of sex

Sex
Sex Proportion # of patients
Male 3420
Female 4398

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 2068
Not Diagnosed 143

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