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)

(Homozon Oxygen Therapy)
Type
Prescription Drug
How many have tried
1,092
Tried for
idiopathic pulmonary fibrosis (1023) pulmonary fibrosis (70)
8 more
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
297
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
175
Treatment name(s)
Type
Physical Therapy
How many have tried
94
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Supplement
How many have tried
75
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 (298 evaluations)
Side effects
dry nose nosebleeds (epistaxis) 30 more
Total evaluations
309
Tried for
idiopathic pulmonary fibrosis (1023) pulmonary fibrosis (70)
8 more
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (193 evaluations)
Side effects
sensitivity to sunlight decreased appetite 61 more
Total evaluations
198
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (149 evaluations)
Side effects
diarrhea nausea 42 more
Total evaluations
149
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (45 evaluations)
Side effects
tiredness ankle pain (front) 11 more
Total evaluations
46
Treatment name(s)

(GNC N-Acetyl Cysteine)
Perceived effectiveness
for idiopathic pulmonary fibrosis (27 evaluations)
Side effects
heartburn hiccups (hiccoughs) when starting to eat/drink 1 more
Total evaluations
31
Treatment name(s)

(Deltasone)
Perceived effectiveness
for idiopathic pulmonary fibrosis (37 evaluations)
Side effects
weight gain abdominal bloating 39 more
Total evaluations
54
Treatment name(s)

(Imuran)
Perceived effectiveness
for idiopathic pulmonary fibrosis (8 evaluations)
Side effects
weight gain chest tightness 4 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?

  • 7,906 patients have this condition
  • 61 new patients joined this month
  • 6,788 say PF is their primary condition

Age
Age Proportion # of patients
<20 11
20s 100
30s 270
40s 573
50s 1,052
60s 1,873
70+ 3,103
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 17
20-29 years 23
30-39 years 63
40-49 years 177
50-59 years 387
60-69 years 441
70+ years 242

Sex

Distribution of sex

54% Female
46% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 1,967
Not Diagnosed 124

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