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
608
Check to add this treatment to your profile
Treatment name(s)

(Esbriet)
Type
Prescription Drug
How many have tried
101
Check to add this treatment to your profile
Treatment name(s)

(GNC N-Acetyl Cysteine)
Type
Over the Counter Drug
How many have tried
96
Check to add this treatment to your profile
Treatment name(s)
Type
Physical Therapy
How many have tried
73
Check to add this treatment to your profile
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
48
Check to add this treatment to your profile
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
37
Check to add this treatment to your profile
Treatment name(s)

(Ofev)
Type
Prescription Drug
How many have tried
17
Check to add this treatment to your profile
Treatment name(s)

(VATS Lung Biopsy)
Type
Procedures
How many have tried
13
Check to add this treatment to your profile
Treatment name(s)

(Prednisolone Ophthalmic)
Type
Prescription Drug
How many have tried
9
Check to add this treatment to your profile
Treatment name(s)

(Albuterol Inhaler)
Type
Prescription Drug
How many have tried
6
Tried for
Idiopathic Pulmonary Fibrosis (4) Fatigue (1)
1 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 (74 evaluations)
Side effects
Runny nose (rhinorrhea) Nosebleeds 7 more
How many evaluations
76
Check to add this treatment to your profile
Treatment name(s)

(Esbriet)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (71 evaluations)
Side effects
Decreased appetite Nausea 31 more
How many evaluations
74
Check to add this treatment to your profile
Treatment name(s)

(GNC N-Acetyl Cysteine)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (18 evaluations)
Side effects
Hiccups (hiccoughs) when starting to eat/drink Stomach discomfort
How many evaluations
18
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (17 evaluations)
Side effects
Shortness of breath with exertion Fatigue 1 more
How many evaluations
19
Check to add this treatment to your profile
Treatment name(s)

(Deltasone)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (12 evaluations)
Side effects
Weight gain Difficulty sleeping through night 36 more
How many evaluations
21
Check to add this treatment to your profile
Treatment name(s)

(Imuran)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (14 evaluations)
Side effects
Abdominal bloating Back pain around kidneys 11 more
How many evaluations
16
Check to add this treatment to your profile
Treatment name(s)

(Ofev)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (16 evaluations)
Side effects
Nausea Diarrhea 7 more
How many evaluations
16
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 (8 evaluations)
Side effects
None Trembling
How many evaluations
9
Tried for
Idiopathic Pulmonary Fibrosis (4) Fatigue (1)
1 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 8
20s 44
30s 70
40s 231
50s 630
60s 1,283
70+ 1,575

Gender

Distribution of females vs. males

47% Females
53% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 8
20-29 years 11
30-39 years 25
40-49 years 108
50-59 years 233
60-69 years 229
70+ years 122

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 1,000
Not Diagnosed 47

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