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
948
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
283
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
181
Treatment name(s)
Type
Physical Therapy
How many have tried
85
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Supplement
How many have tried
46
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
41
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
27
Treatment name(s)

(Albuterol Inhaler)
Type
Prescription Drug
How many have tried
14
Treatment name(s)

(VATS Lung Biopsy)
Type
Procedures
How many have tried
12
Treatment name(s)

(CellCept)
Type
Prescription Drug
How many have tried
12

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 (290 evaluations)
Side effects
dry nose nosebleeds (epistaxis) 30 more
Total evaluations
300
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (199 evaluations)
Side effects
decreased appetite sensitivity to sunlight 63 more
Total evaluations
203
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (174 evaluations)
Side effects
diarrhea decreased appetite 46 more
Total evaluations
175
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (48 evaluations)
Side effects
tiredness ankle pain (front) 10 more
Total evaluations
50
Treatment name(s)

(GNC N-Acetyl Cysteine)
Perceived effectiveness
for idiopathic pulmonary fibrosis (19 evaluations)
Side effects
heartburn hiccups (hiccoughs) when starting to eat/drink 1 more
Total evaluations
23
Treatment name(s)

(Deltasone)
Perceived effectiveness
for idiopathic pulmonary fibrosis (31 evaluations)
Side effects
weight gain abdominal bloating 35 more
Total evaluations
49
Treatment name(s)

(Imuran)
Perceived effectiveness
for idiopathic pulmonary fibrosis (7 evaluations)
Side effects
weight gain chest tightness 4 more
Total evaluations
14
Treatment name(s)

(Albuterol Inhaler)
Perceived effectiveness
for idiopathic pulmonary fibrosis (17 evaluations)
Side effects
high blood pressure (hypertension) migraine headaches 5 more
Total evaluations
21
Treatment name(s)

(VATS Lung Biopsy)
Perceived effectiveness
for idiopathic pulmonary fibrosis (5 evaluations)
Side effects
Hospitalization allergic reaction to patch adhesive 2 more
Total evaluations
7
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?

  • 8,177 patients have this condition
  • 74 new patients joined this month
  • 6,890 say PF is their primary condition

Age
Age Proportion # of patients
<20 11
20s 110
30s 293
40s 603
50s 1,081
60s 1,890
70+ 3,254
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 18
20-29 years 25
30-39 years 64
40-49 years 179
50-59 years 392
60-69 years 446
70+ years 248

Distribution of sex

Sex
Sex Proportion # of patients
Male 3,303
Female 4,073

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 2,040
Not Diagnosed 142

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