Pulmonary fibrosis

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  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

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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
538
Check to add this treatment to your profile
Treatment name(s)

(ACC 600, ACC Long, Acetylcyst) 17 more
Type
Over the Counter Drug
How many have tried
95
Check to add this treatment to your profile
Treatment name(s)

(Esbriet, IPF Phase III ASCEND (pirfenidone), IPF Phase III CAPACITY 1 (pirfenidone)) 4 more
Type
Prescription Drug
How many have tried
79
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)

(Cortancyl, Deltasone, Encorton) 4 more
Type
Prescription Drug
How many have tried
45
Check to add this treatment to your profile
Treatment name(s)

(Azapress, Azasan, Imuran) 2 more
Type
Prescription Drug
How many have tried
37
Check to add this treatment to your profile
Treatment name(s)

(VATS Lung Biopsy)
Type
Procedures
How many have tried
12
Check to add this treatment to your profile
Treatment name(s)

(IPF Phase III Nintedanib (BIBF1120), Ofev)
Type
Prescription Drug
How many have tried
8
Check to add this treatment to your profile
Treatment name(s)

(Deltacortril, Econopred Plus, Omnacortil) 7 more
Type
Prescription Drug
How many have tried
8
Check to add this treatment to your profile
Treatment name(s)

(APO-Salvent CFC Free, Albuterol Inhaler, Albuterol Nebulizer) 9 more
Type
Prescription Drug
How many have tried
5
Tried for
Idiopathic Pulmonary Fibrosis (3) 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 (61 evaluations)
Side effects
Runny nose (rhinorrhea) Nosebleeds 7 more
How many evaluations
64
Check to add this treatment to your profile
Treatment name(s)

(ACC 600, ACC Long, Acetylcyst) 17 more
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (17 evaluations)
Side effects
Hiccups (hiccoughs) when starting to eat/drink Stomach discomfort
How many evaluations
17
Check to add this treatment to your profile
Treatment name(s)

(Esbriet, IPF Phase III ASCEND (pirfenidone), IPF Phase III CAPACITY 1 (pirfenidone)) 4 more
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (44 evaluations)
Side effects
Acid reflux Loss of appetite 25 more
How many evaluations
45
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (13 evaluations)
Side effects
Shortness of breath with exertion Fatigue
How many evaluations
15
Check to add this treatment to your profile
Treatment name(s)

(Cortancyl, Deltasone, Encorton) 4 more
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (10 evaluations)
Side effects
Weight gain Difficulty sleeping through night 33 more
How many evaluations
18
Check to add this treatment to your profile
Treatment name(s)

(Azapress, Azasan, Imuran) 2 more
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (12 evaluations)
Side effects
Abdominal bloating Back pain around kidneys 10 more
How many evaluations
14
Check to add this treatment to your profile
Treatment name(s)

(VATS Lung Biopsy)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (2 evaluations)
Side effects
Allergic reaction to patch adhesive Shortness of breath (dyspnea)
How many evaluations
2
Check to add this treatment to your profile
Treatment name(s)

(IPF Phase III Nintedanib (BIBF1120), Ofev)
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (4 evaluations)
Side effects
Nausea
How many evaluations
4
Check to add this treatment to your profile
Treatment name(s)

(Deltacortril, Econopred Plus, Omnacortil) 7 more
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (3 evaluations)
Side effects
Chronic Hyperglycemia Elevated blood pressure
How many evaluations
4
Check to add this treatment to your profile
Treatment name(s)

(APO-Salvent CFC Free, Albuterol Inhaler, Albuterol Nebulizer) 9 more
Perceived effectiveness
for Idiopathic Pulmonary Fibrosis (5 evaluations)
Side effects
None Trembling
How many evaluations
6
Tried for
Idiopathic Pulmonary Fibrosis (3) 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 7
20s 34
30s 57
40s 212
50s 565
60s 1,165
70+ 1,379

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 10
30-39 years 24
40-49 years 99
50-59 years 220
60-69 years 208
70+ years 111

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 896
Not Diagnosed 44

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