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 for pulmonary fibrosis

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

(transtracheal oxygen)
Type
Prescription Drug
How many have tried
232
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
9
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
48
Treatment name(s)
Type
Physical Therapy
How many have tried
128
Treatment name(s)

(Prednisone Intensol)
Type
Prescription Drug
How many have tried
89
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
43
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Supplement
How many have tried
62
Treatment name(s)

(Cytoxan)
Type
Prescription Drug
How many have tried
2

Data from patients with pulmonary fibrosis, who have ever reported treatments, ordered by their reporting frequency during 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)

(transtracheal oxygen)
Perceived effectiveness
for idiopathic pulmonary fibrosis (79 evaluations)
Side effects
dry nose nosebleeds (epistaxis) 13 more
Total evaluations
83
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (85 evaluations)
Side effects
diarrhea nausea 35 more
Total evaluations
84
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (50 evaluations)
Side effects
abdominal pain headaches 31 more
Total evaluations
51
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (17 evaluations)
Side effects
muscle pain nausea during and after eating 1 more
Total evaluations
18
Treatment name(s)

(Prednisone Intensol)
Perceived effectiveness
for idiopathic pulmonary fibrosis (4 evaluations)
Side effects
weight gain blurry vision 3 more
Total evaluations
6
Treatment name(s)

(Imuran)
Perceived effectiveness
for idiopathic pulmonary fibrosis (2 evaluations)
Side effects
chest tightness
Total evaluations
2
Treatment name(s)

(GNC N-Acetyl Cysteine)
Perceived effectiveness
for idiopathic pulmonary fibrosis (3 evaluations)
Side effects
Total evaluations
3
Treatment name(s)

(Cytoxan)
Perceived effectiveness
for hypersensitivity pneumonitis (1 evaluation)
Side effects
upset stomach
Total evaluations
1
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with pulmonary fibrosis, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
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Who has pulmonary fibrosis on PatientsLikeMe?

  • 9 new patients joined this month
  • 7250 say PF is their primary condition

Age
Age Proportion # of patients
<20 7
20s 88
30s 273
40s 613
50s 1086
60s 1823
70+ 4010
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 397
60-69 years 449
70+ years 255

Distribution of sex

Sex
Sex Proportion # of patients
Male 3512
Female 4543

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 2076
Not Diagnosed 144

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