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, insomnia, fatigue, and pain) 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)

(Homozon Oxygen Therapy)
Type
Prescription Drug
How many have tried
1,101
Tried for
idiopathic pulmonary fibrosis (1031) pulmonary fibrosis (71)
8 more
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
298
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
169
Treatment name(s)
Type
Physical Therapy
How many have tried
100
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Supplement
How many have tried
81
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
48
Treatment name(s)

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

(VATS Lung Biopsy)
Type
Procedures
How many have tried
17
Treatment name(s)

(Albuterol Inhaler)
Type
Prescription Drug
How many have tried
16
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.
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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)

(Homozon Oxygen Therapy)
Perceived effectiveness
for idiopathic pulmonary fibrosis (293 evaluations)
Side effects
dry nose nosebleeds 31 more
Total evaluations
305
Tried for
idiopathic pulmonary fibrosis (1031) pulmonary fibrosis (71)
8 more
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (187 evaluations)
Side effects
sensitivity to sunlight decreased appetite 59 more
Total evaluations
192
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (134 evaluations)
Side effects
diarrhea decreased appetite 40 more
Total evaluations
133
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (42 evaluations)
Side effects
shortness of breath with exertion tiredness 10 more
Total evaluations
44
Treatment name(s)

(GNC N-Acetyl Cysteine)
Perceived effectiveness
for idiopathic pulmonary fibrosis (28 evaluations)
Side effects
heartburn hiccups (hiccoughs) when starting to eat/drink 1 more
Total evaluations
32
Treatment name(s)

(Deltasone)
Perceived effectiveness
for idiopathic pulmonary fibrosis (39 evaluations)
Side effects
weight gain abdominal bloating 39 more
Total evaluations
55
Treatment name(s)

(Imuran)
Perceived effectiveness
for idiopathic pulmonary fibrosis (8 evaluations)
Side effects
weight gain dry mouth 3 more
Total evaluations
15
Treatment name(s)

(VATS Lung Biopsy)
Perceived effectiveness
for idiopathic pulmonary fibrosis (6 evaluations)
Side effects
Hospitalization allergic reaction to patch adhesive 3 more
Total evaluations
8
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)

(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.
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Who has pulmonary fibrosis on PatientsLikeMe?

  • 7,653 patients have this condition
  • 91 new patients joined this month
  • 6,686 say PF is their primary condition

Age
Age Proportion # of patients
<20 8
20s 88
30s 248
40s 537
50s 1,030
60s 1,848
70+ 2,985
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 15
20-29 years 21
30-39 years 59
40-49 years 173
50-59 years 385
60-69 years 428
70+ years 236

Sex

Distribution of sex

53% Female
47% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 1,928
Not Diagnosed 110

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