Pulmonary fibrosis

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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
1,079
Tried for
Idiopathic Pulmonary Fibrosis (1010) Pulmonary fibrosis (68)
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
160
Check to add this treatment to your profile
Treatment name(s)
Type
Physical Therapy
How many have tried
104
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
51
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
18
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
Total evaluations
Tried for
Check to add this treatment to your profile
Treatment name(s)

(Homozon Oxygen Therapy)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (275 evaluations)
Side effects
Dry nose Nosebleeds 28 more
Total evaluations
286
Tried for
Idiopathic Pulmonary Fibrosis (1010) Pulmonary fibrosis (68)
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 56 more
Total evaluations
183
Check to add this treatment to your profile
Treatment name(s)

(Ofev)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (120 evaluations)
Side effects
Diarrhea Nausea 37 more
Total evaluations
120
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 (26 evaluations)
Side effects
Heartburn Hiccups (hiccoughs) when starting to eat/drink 1 more
Total evaluations
30
Check to add this treatment to your profile
Treatment name(s)

(Deltasone)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (39 evaluations)
Side effects
Weight gain Abdominal bloating 42 more
Total evaluations
56
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 (21 evaluations)
Side effects
High Blood Pressure (Hypertension) Migraine headaches 5 more
Total evaluations
25
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
Total evaluations
10
  • 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?

  • 7,293 patients have this condition
  • 68 new patients joined this month
  • 6,520 say PF is their primary condition

Age
Age Proportion # of patients
<20 7
20s 85
30s 224
40s 476
50s 968
60s 1,827
70+ 2,818
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 16
20-29 years 21
30-39 years 57
40-49 years 168
50-59 years 368
60-69 years 419
70+ years 222

Sex

Distribution of sex

52% Female
48% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 1,863
Not Diagnosed 106

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