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
841
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
278
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
183
Treatment name(s)
Type
Physical Therapy
How many have tried
78
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
36
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Supplement
How many have tried
34
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
24
Treatment name(s)

(Albuterol Inhaler)
Type
Prescription Drug
How many have tried
14
Treatment name(s)

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

(VATS Lung Biopsy)
Type
Procedures
How many have tried
10

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 (284 evaluations)
Side effects
dry nose nosebleeds (epistaxis) 30 more
Total evaluations
294
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (196 evaluations)
Side effects
decreased appetite sensitivity to sunlight 61 more
Total evaluations
200
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (178 evaluations)
Side effects
diarrhea decreased appetite 46 more
Total evaluations
180
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (49 evaluations)
Side effects
tiredness ankle pain (front) 10 more
Total evaluations
51
Treatment name(s)

(Deltasone)
Perceived effectiveness
for idiopathic pulmonary fibrosis (29 evaluations)
Side effects
weight gain abdominal bloating 33 more
Total evaluations
46
Treatment name(s)

(GNC N-Acetyl Cysteine)
Perceived effectiveness
for idiopathic pulmonary fibrosis (13 evaluations)
Side effects
heartburn hiccups (hiccoughs) when starting to eat/drink 1 more
Total evaluations
17
Treatment name(s)

(Imuran)
Perceived effectiveness
for idiopathic pulmonary fibrosis (7 evaluations)
Side effects
weight gain chest tightness 4 more
Total evaluations
14
Treatment name(s)

(Albuterol Inhaler)
Perceived effectiveness
for idiopathic pulmonary fibrosis (16 evaluations)
Side effects
high blood pressure (hypertension) migraine headaches 5 more
Total evaluations
20
Treatment name(s)

(CellCept)
Perceived effectiveness
for idiopathic pulmonary fibrosis (1 evaluation)
Side effects
bowel problems fatigue 3 more
Total evaluations
8
Treatment name(s)

(VATS Lung Biopsy)
Perceived effectiveness
for idiopathic pulmonary fibrosis (4 evaluations)
Side effects
Hospitalization nerve pain (neuralgia) 1 more
Total evaluations
6
  • 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?

  • 8436 patients have this condition
  • 99 new patients joined this month
  • 6952 say PF is their primary condition

Age
Age Proportion # of patients
<20 12
20s 120
30s 321
40s 664
50s 1116
60s 1920
70+ 3329
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 181
50-59 years 393
60-69 years 447
70+ years 248

Distribution of sex

Sex
Sex Proportion # of patients
Male 3350
Female 4275

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 2056
Not Diagnosed 143

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