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 co-founder Jamie Heywood 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
732
Check to add this treatment to your profile
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
228
Check to add this treatment to your profile
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Over the Counter Drug
How many have tried
100
Check to add this treatment to your profile
Treatment name(s)
Type
Physical Therapy
How many have tried
78
Check to add this treatment to your profile
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
64
Check to add this treatment to your profile
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
52
Check to add this treatment to your profile
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
38
Check to add this treatment to your profile
Treatment name(s)

(VATS Lung Biopsy)
Type
Procedures
How many have tried
14
Check to add this treatment to your profile
Treatment name(s)

(Prednisolone Ophthalmic)
Type
Prescription Drug
How many have tried
11
Check to add this treatment to your profile
Treatment name(s)

(Albuterol Inhaler)
Type
Prescription Drug
How many have tried
9
Tried for
Idiopathic Pulmonary Fibrosis (6) Fatigue (1)
2 more

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 (112 evaluations)
Side effects
Runny nose (rhinorrhea) Dry nose 12 more
How many evaluations
114
Check to add this treatment to your profile
Treatment name(s)

(Esbriet)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (98 evaluations)
Side effects
Decreased appetite Indigestion 31 more
How many evaluations
101
Check to add this treatment to your profile
Treatment name(s)

(GNC N-Acetyl Cysteine)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (21 evaluations)
Side effects
Hiccups (hiccoughs) when starting to eat/drink Nausea 1 more
How many evaluations
22
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (19 evaluations)
Side effects
Shortness of breath with exertion Breathing difficulty 2 more
How many evaluations
21
Check to add this treatment to your profile
Treatment name(s)

(Ofev)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (38 evaluations)
Side effects
Diarrhea Abdominal pain 8 more
How many evaluations
38
Check to add this treatment to your profile
Treatment name(s)

(Deltasone)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (17 evaluations)
Side effects
Weight gain Bloating 41 more
How many evaluations
30
Check to add this treatment to your profile
Treatment name(s)

(Imuran)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (17 evaluations)
Side effects
Nausea and vomiting Abdominal bloating 12 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 (3 evaluations)
Side effects
Allergic reaction to patch adhesive Shortness of breath (dyspnea)
How many evaluations
3
Check to add this treatment to your profile
Treatment name(s)

(Prednisolone Ophthalmic)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (3 evaluations)
Side effects
Chronic Hyperglycemia Elevated blood pressure 2 more
How many evaluations
5
Check to add this treatment to your profile
Treatment name(s)

(Albuterol Inhaler)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (12 evaluations)
Side effects
None Trembling
How many evaluations
13
Tried for
Idiopathic Pulmonary Fibrosis (6) Fatigue (1)
2 more

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 50
30s 71
40s 253
50s 669
60s 1,451
70+ 1,921

Sex

Distribution of sex

47% Female
53% Male
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 8
20-29 years 13
30-39 years 31
40-49 years 123
50-59 years 267
60-69 years 279
70+ years 160

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 1,242
Not Diagnosed 63

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