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.
Last updated:

Treatments taken by people with pulmonary fibrosis

You’ve tried
Treatment name(s)
Type
How many have tried
Tried for
Check to add this treatment to your profile
Treatment name(s)

(Homozon Oxygen Therapy)
Type
Prescription Drug
How many have tried
1,081
Tried for
idiopathic pulmonary fibrosis (1012) pulmonary fibrosis (69)
8 more
Check to add this treatment to your profile
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
295
Check to add this treatment to your profile
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
161
Check to add this treatment to your profile
Treatment name(s)
Type
Physical Therapy
How many have tried
105
Check to add this treatment to your profile
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Supplement
How many have tried
92
Check to add this treatment to your profile
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
49
Check to add this treatment to your profile
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
31
Check to add this treatment to your profile
Treatment name(s)

(VATS Lung Biopsy)
Type
Procedures
How many have tried
21
Check to add this treatment to your profile
Treatment name(s)

(Albuterol Inhaler)
Type
Prescription Drug
How many have tried
17
Check to add this treatment to your profile
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.
Last updated:
You’ve tried this treatment.

Compare treatments taken by people with pulmonary fibrosis

You’ve tried
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Check to add this treatment to your profile
Treatment name(s)

(Homozon Oxygen Therapy)
Perceived effectiveness
for idiopathic pulmonary fibrosis (280 evaluations)
Side effects
Dry nose Nosebleeds 29 more
Total evaluations
291
Tried for
idiopathic pulmonary fibrosis (1012) pulmonary fibrosis (69)
8 more
Check to add this treatment to your profile
Treatment name(s)

(Esbriet)
Perceived effectiveness
for idiopathic pulmonary fibrosis (178 evaluations)
Side effects
Decreased appetite Indigestion 57 more
Total evaluations
183
Check to add this treatment to your profile
Treatment name(s)

(Ofev)
Perceived effectiveness
for idiopathic pulmonary fibrosis (121 evaluations)
Side effects
Diarrhea Nausea 37 more
Total evaluations
121
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for idiopathic pulmonary fibrosis (39 evaluations)
Side effects
Shortness of breath with exertion Tiredness 5 more
Total evaluations
41
Check to add this treatment to your profile
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
Check to add this treatment to your profile
Treatment name(s)

(Deltasone)
Perceived effectiveness
for idiopathic pulmonary fibrosis (38 evaluations)
Side effects
Weight gain Abdominal bloating 40 more
Total evaluations
54
Check to add this treatment to your profile
Treatment name(s)

(Imuran)
Perceived effectiveness
for idiopathic pulmonary fibrosis (10 evaluations)
Side effects
Dry mouth iron deficiency anemia 4 more
Total evaluations
15
Check to add this treatment to your profile
Treatment name(s)

(VATS Lung Biopsy)
Perceived effectiveness
for idiopathic pulmonary fibrosis (7 evaluations)
Side effects
Hospitalization Allergic reaction to patch adhesive 3 more
Total evaluations
9
Check to add this treatment to your profile
Treatment name(s)

(Albuterol Inhaler)
Perceived effectiveness
for idiopathic pulmonary fibrosis (19 evaluations)
Side effects
high blood pressure (hypertension) Migraine headaches 5 more
Total evaluations
23
Check to add this treatment to your profile
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.
Last updated:
You’ve tried this treatment.

Who has pulmonary fibrosis on PatientsLikeMe?

  • 7,334 patients have this condition
  • 62 new patients joined this month
  • 6,536 say PF is their primary condition

Age
Age Proportion # of patients
<20 7
20s 87
30s 227
40s 486
50s 976
60s 1,822
70+ 2,838
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 168
50-59 years 368
60-69 years 421
70+ years 224

Sex

Distribution of sex

52% Female
48% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 1,868
Not Diagnosed 108

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