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
296
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
29
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 (296 evaluations)
Side effects
dry nose nosebleeds (epistaxis) 30 more
Total evaluations
307
Tried for
idiopathic pulmonary fibrosis (1023) pulmonary fibrosis (70)
8 more
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (192 evaluations)
Side effects
sensitivity to sunlight decreased appetite 62 more
Total evaluations
197
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (146 evaluations)
Side effects
diarrhea nausea 41 more
Total evaluations
146
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 (7 evaluations)
Side effects
weight gain dry mouth 3 more
Total evaluations
14
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?

  • 7,889 patients have this condition
  • 58 new patients joined this month
  • 6,782 say PF is their primary condition

Age
Age Proportion # of patients
<20 12
20s 98
30s 273
40s 565
50s 1,051
60s 1,875
70+ 3,093
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 175
50-59 years 387
60-69 years 442
70+ years 242

Sex

Distribution of sex

54% Female
46% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 1,964
Not Diagnosed 118

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