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
614
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
182
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
175
Treatment name(s)
Type
Physical Therapy
How many have tried
47
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
23
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Supplement
How many have tried
12
Treatment name(s)

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

(Albuterol Inhaler)
Type
Prescription Drug
How many have tried
9
Treatment name(s)
Type
Equipment
How many have tried
8
Treatment name(s)

(CellCept)
Type
Prescription Drug
How many have tried
7

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 (193 evaluations)
Side effects
dry nose dry mouth 23 more
Total evaluations
199
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (141 evaluations)
Side effects
sensitivity to sunlight decreased appetite 59 more
Total evaluations
145
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (162 evaluations)
Side effects
diarrhea decreased appetite 44 more
Total evaluations
161
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (33 evaluations)
Side effects
chronic cough fatigue 4 more
Total evaluations
34
Treatment name(s)

(Deltasone)
Perceived effectiveness
for idiopathic pulmonary fibrosis (18 evaluations)
Side effects
weight gain abdominal bloating 23 more
Total evaluations
32
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 (4 evaluations)
Side effects
weight gain chest tightness 2 more
Total evaluations
10
Treatment name(s)

(Albuterol Inhaler)
Perceived effectiveness
for idiopathic pulmonary fibrosis (10 evaluations)
Side effects
high blood pressure (hypertension) migraine headaches 4 more
Total evaluations
13
Treatment name(s)
Perceived effectiveness
for shortness of breath (dyspnea) (2 evaluations)
Side effects
Total evaluations
3
Treatment name(s)

(CellCept)
Perceived effectiveness
for idiopathic pulmonary fibrosis (1 evaluation)
Side effects
bowel problems skin rash
Total evaluations
5
  • 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?

  • 8749 patients have this condition
  • 30 new patients joined this month
  • 7097 say PF is their primary condition

Age
Age Proportion # of patients
<20 10
20s 107
30s 300
40s 653
50s 1115
60s 1901
70+ 3670
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 18
20-29 years 29
30-39 years 65
40-49 years 181
50-59 years 396
60-69 years 450
70+ years 251

Distribution of sex

Sex
Sex Proportion # of patients
Male 3456
Female 4455

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 2072
Not Diagnosed 143

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