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
746
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
268
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
184
Treatment name(s)
Type
Physical Therapy
How many have tried
63
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
30
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Supplement
How many have tried
24
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
20
Treatment name(s)

(Albuterol Inhaler)
Type
Prescription Drug
How many have tried
12
Treatment name(s)

(VATS Lung Biopsy)
Type
Procedures
How many have tried
9
Treatment name(s)

(CellCept)
Type
Prescription Drug
How many have tried
9

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 (245 evaluations)
Side effects
dry nose nosebleeds (epistaxis) 27 more
Total evaluations
255
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (192 evaluations)
Side effects
decreased appetite sensitivity to sunlight 61 more
Total evaluations
196
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (177 evaluations)
Side effects
diarrhea decreased appetite 46 more
Total evaluations
176
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (41 evaluations)
Side effects
ankle pain (front) chronic cough 8 more
Total evaluations
42
Treatment name(s)

(Deltasone)
Perceived effectiveness
for idiopathic pulmonary fibrosis (28 evaluations)
Side effects
weight gain abdominal bloating 29 more
Total evaluations
43
Treatment name(s)

(GNC N-Acetyl Cysteine)
Perceived effectiveness
for idiopathic pulmonary fibrosis (9 evaluations)
Side effects
heartburn hiccups (hiccoughs) when starting to eat/drink 1 more
Total evaluations
13
Treatment name(s)

(Imuran)
Perceived effectiveness
for idiopathic pulmonary fibrosis (7 evaluations)
Side effects
weight gain chest tightness 3 more
Total evaluations
13
Treatment name(s)

(Albuterol Inhaler)
Perceived effectiveness
for idiopathic pulmonary fibrosis (15 evaluations)
Side effects
high blood pressure (hypertension) migraine headaches 4 more
Total evaluations
18
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 pulmonary fibrosis (3 evaluations)
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?

  • 8598 patients have this condition
  • 17 new patients joined this month
  • 7015 say PF is their primary condition

Age
Age Proportion # of patients
<20 11
20s 120
30s 317
40s 672
50s 1118
60s 1915
70+ 3475
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 396
60-69 years 451
70+ years 248

Distribution of sex

Sex
Sex Proportion # of patients
Male 3404
Female 4371

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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