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
992
Check to add this treatment to your profile
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
280
Check to add this treatment to your profile
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
123
Check to add this treatment to your profile
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Over the Counter Drug
How many have tried
103
Check to add this treatment to your profile
Treatment name(s)
Type
Physical Therapy
How many have tried
95
Check to add this treatment to your profile
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
58
Check to add this treatment to your profile
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
40
Check to add this treatment to your profile
Treatment name(s)

(VATS Lung Biopsy)
Type
Procedures
How many have tried
20
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)

(Albuterol Inhaler)
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)

(Homozon Oxygen Therapy)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (206 evaluations)
Side effects
Dry nose Nosebleeds 22 more
How many evaluations
212
Check to add this treatment to your profile
Treatment name(s)

(Esbriet)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (152 evaluations)
Side effects
Decreased appetite Sensitivity to sunlight 48 more
How many evaluations
158
Check to add this treatment to your profile
Treatment name(s)

(Ofev)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (81 evaluations)
Side effects
Diarrhea Decreased appetite 21 more
How many evaluations
81
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 Stomach discomfort
How many evaluations
26
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (24 evaluations)
Side effects
Shortness of breath with exertion Breathing difficulty 2 more
How many evaluations
27
Check to add this treatment to your profile
Treatment name(s)

(Deltasone)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (36 evaluations)
Side effects
Weight gain Fluid retention weight gain 39 more
How many evaluations
54
Check to add this treatment to your profile
Treatment name(s)

(Imuran)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (15 evaluations)
Side effects
Hair loss Iron Deficiency Anemia 6 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 (5 evaluations)
Side effects
Hospitalization Allergic reaction to patch adhesive 2 more
How many evaluations
6
Check to add this treatment to your profile
Treatment name(s)

(Panafcortelone)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (4 evaluations)
Side effects
Chronic Hyperglycemia Elevated blood pressure 2 more
How many evaluations
6
Check to add this treatment to your profile
Treatment name(s)

(Albuterol Inhaler)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (18 evaluations)
Side effects
Hypertension Migraine headaches 5 more
How many evaluations
21

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 70
30s 159
40s 366
50s 887
60s 1,746
70+ 2,547

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 18
30-39 years 49
40-49 years 154
50-59 years 338
60-69 years 388
70+ years 209

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 1,709
Not Diagnosed 97

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