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
1,092
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
167
Treatment name(s)
Type
Physical Therapy
How many have tried
104
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
47
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
31
Treatment name(s)

(VATS Lung Biopsy)
Type
Procedures
How many have tried
19
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 (289 evaluations)
Side effects
Dry nose Nosebleeds 31 more
Total evaluations
301
Tried for
idiopathic pulmonary fibrosis (1023) pulmonary fibrosis (70)
8 more
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (186 evaluations)
Side effects
Sensitivity to sunlight Decreased appetite 57 more
Total evaluations
191
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (131 evaluations)
Side effects
Diarrhea Decreased appetite 40 more
Total evaluations
131
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (42 evaluations)
Side effects
Tiredness Shortness of breath with exertion 9 more
Total evaluations
44
Treatment name(s)

(GNC N-Acetyl Cysteine)
Perceived effectiveness
for idiopathic pulmonary fibrosis (26 evaluations)
Side effects
Heartburn Hiccups (hiccoughs) when starting to eat/drink 1 more
Total evaluations
30
Treatment name(s)

(Deltasone)
Perceived effectiveness
for idiopathic pulmonary fibrosis (38 evaluations)
Side effects
Weight gain Abdominal bloating 39 more
Total evaluations
54
Treatment name(s)

(Imuran)
Perceived effectiveness
for idiopathic pulmonary fibrosis (11 evaluations)
Side effects
Weight gain Dry mouth 4 more
Total evaluations
18
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?

  • 7,466 patients have this condition
  • 73 new patients joined this month
  • 6,612 say PF is their primary condition

Age
Age Proportion # of patients
<20 7
20s 89
30s 228
40s 505
50s 1,001
60s 1,828
70+ 2,909
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 15
20-29 years 21
30-39 years 57
40-49 years 171
50-59 years 371
60-69 years 425
70+ years 231

Sex

Distribution of sex

53% Female
47% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 1,893
Not Diagnosed 109

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