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)
Type
Prescription Drug
How many have tried
965
Check to add this treatment to your profile
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
274
Check to add this treatment to your profile
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
110
Check to add this treatment to your profile
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Over the Counter Drug
How many have tried
106
Check to add this treatment to your profile
Treatment name(s)
Type
Physical Therapy
How many have tried
97
Check to add this treatment to your profile
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
60
Check to add this treatment to your profile
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
42
Check to add this treatment to your profile
Treatment name(s)

(VATS Lung Biopsy)
Type
Procedures
How many have tried
19
Check to add this treatment to your profile
Treatment name(s)

(Panafcortelone)
Type
Prescription Drug
How many have tried
13
Check to add this treatment to your profile
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.
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
How many evaluations
Tried for
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (178 evaluations)
Side effects
Dry nose Runny nose (rhinorrhea) 21 more
How many evaluations
183
Check to add this treatment to your profile
Treatment name(s)

(Esbriet)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (136 evaluations)
Side effects
Decreased appetite Sensitivity to sunlight 37 more
How many evaluations
141
Check to add this treatment to your profile
Treatment name(s)

(Ofev)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (68 evaluations)
Side effects
Diarrhea Decreased appetite 9 more
How many evaluations
68
Check to add this treatment to your profile
Treatment name(s)

(GNC N-Acetyl Cysteine)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (23 evaluations)
Side effects
Hiccups (hiccoughs) when starting to eat/drink Nausea 1 more
How many evaluations
25
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (21 evaluations)
Side effects
Shortness of breath with exertion Breathing difficulty 2 more
How many evaluations
24
Check to add this treatment to your profile
Treatment name(s)

(Deltasone)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (35 evaluations)
Side effects
Weight gain Fluid retention weight gain 40 more
How many evaluations
52
Check to add this treatment to your profile
Treatment name(s)

(Imuran)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (17 evaluations)
Side effects
Dizziness Drowsiness 9 more
How many evaluations
19
Check to add this treatment to your profile
Treatment name(s)

(VATS Lung Biopsy)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (4 evaluations)
Side effects
Hospitalization Allergic reaction to patch adhesive 1 more
How many evaluations
5
Check to add this treatment to your profile
Treatment name(s)

(Panafcortelone)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (3 evaluations)
Side effects
Chronic Hyperglycemia Elevated blood pressure 2 more
How many evaluations
7
Check to add this treatment to your profile
Treatment name(s)

(CellCept)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (3 evaluations)
Side effects
Fatigue Mild Depression 3 more
How many evaluations
9

Data from patients with Pulmonary fibrosis, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Who has Pulmonary fibrosis on PatientsLikeMe?


Age
Age Proportion # of patients
<20 6
20s 72
30s 160
40s 394
50s 890
60s 1,802
70+ 2,346

Sex

Distribution of sex

50% Female
50% Male
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 12
20-29 years 17
30-39 years 46
40-49 years 149
50-59 years 328
60-69 years 377
70+ years 206

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 1,663
Not Diagnosed 90

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