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
1,070
Tried for
idiopathic pulmonary fibrosis (1003) pulmonary fibrosis (68)
8 more
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
294
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
174
Treatment name(s)
Type
Physical Therapy
How many have tried
96
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Supplement
How many have tried
71
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
46
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
29
Treatment name(s)

(Albuterol Inhaler)
Type
Prescription Drug
How many have tried
15
Treatment name(s)

(VATS Lung Biopsy)
Type
Procedures
How many have tried
15
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)
Perceived effectiveness
for idiopathic pulmonary fibrosis (298 evaluations)
Side effects
dry nose nosebleeds (epistaxis) 29 more
Total evaluations
309
Tried for
idiopathic pulmonary fibrosis (1003) pulmonary fibrosis (68)
8 more
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (199 evaluations)
Side effects
decreased appetite sensitivity to sunlight 65 more
Total evaluations
204
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (159 evaluations)
Side effects
diarrhea decreased appetite 41 more
Total evaluations
160
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (49 evaluations)
Side effects
tiredness ankle pain (front) 11 more
Total evaluations
50
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 (33 evaluations)
Side effects
weight gain abdominal bloating 38 more
Total evaluations
50
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)

(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)

(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?

  • 8,016 patients have this condition
  • 45 new patients joined this month
  • 6,823 say PF is their primary condition

Age
Age Proportion # of patients
<20 11
20s 109
30s 282
40s 591
50s 1,059
60s 1,894
70+ 3,139
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 178
50-59 years 391
60-69 years 444
70+ years 246

Distribution of sex

Sex
Sex Proportion # of patients
Male 3,269
Female 3,952

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 2,020
Not Diagnosed 142

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