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
561
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
142
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
110
Treatment name(s)
Type
Physical Therapy
How many have tried
39
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
20
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Supplement
How many have tried
11
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
10
Treatment name(s)

(Albuterol Inhaler)
Type
Prescription Drug
How many have tried
8
Treatment name(s)
Type
Equipment
How many have tried
8
Treatment name(s)

(Lexapro)
Type
Prescription Drug
How many have tried
6
Tried for
anxious mood (4) depressed mood (3)

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 (175 evaluations)
Side effects
dry nose nosebleeds (epistaxis) 23 more
Total evaluations
180
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (140 evaluations)
Side effects
diarrhea decreased appetite 44 more
Total evaluations
139
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (107 evaluations)
Side effects
nausea sensitivity to sunlight 54 more
Total evaluations
109
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (30 evaluations)
Side effects
chronic cough increased appetite 3 more
Total evaluations
31
Treatment name(s)

(Deltasone)
Perceived effectiveness
for idiopathic pulmonary fibrosis (13 evaluations)
Side effects
weight gain abdominal bloating 18 more
Total evaluations
25
Treatment name(s)

(GNC N-Acetyl Cysteine)
Perceived effectiveness
for idiopathic pulmonary fibrosis (3 evaluations)
Side effects
heartburn
Total evaluations
7
Treatment name(s)

(Imuran)
Perceived effectiveness
for idiopathic pulmonary fibrosis (4 evaluations)
Side effects
weight gain chest tightness 2 more
Total evaluations
10
Treatment name(s)

(Albuterol Inhaler)
Perceived effectiveness
for idiopathic pulmonary fibrosis (3 evaluations)
Side effects
high blood pressure (hypertension) migraine headaches 4 more
Total evaluations
6
Treatment name(s)
Perceived effectiveness
for shortness of breath (dyspnea) (2 evaluations)
Side effects
Total evaluations
4
Treatment name(s)

(Lexapro)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
drowsiness vaginal dryness
Total evaluations
3
Tried for
anxious mood (4) depressed mood (3)
  • 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?

  • 8818 patients have this condition
  • 15 new patients joined this month
  • 7153 say PF is their primary condition

Age
Age Proportion # of patients
<20 10
20s 108
30s 302
40s 645
50s 1117
60s 1894
70+ 3739
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 18
20-29 years 28
30-39 years 65
40-49 years 181
50-59 years 397
60-69 years 450
70+ years 252

Distribution of sex

Sex
Sex Proportion # of patients
Male 3478
Female 4493

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 2074
Not Diagnosed 143

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