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.

What is it like to have 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:

What do patients take to treat Pulmonary fibrosis and its symptoms?

You’ve tried
Treatment name(s)
Type
How many have tried
How many evaluations
Treatment name(s)
Type
Prescription Drug
How many have tried
501
How many evaluations
47
Treatment name(s)

(ACC 600, ACC Long, Acetylcyst) 17 more
Type
Over the Counter Drug
How many have tried
92
How many evaluations
17
Treatment name(s)
Type
Physical Therapy
How many have tried
62
How many evaluations
11
Treatment name(s)

(Esbriet, IPF Phase III ASCEND (pirfenidone), IPF Phase III CAPACITY 1 (pirfenidone)) 3 more
Type
Prescription Drug
How many have tried
59
How many evaluations
34
Treatment name(s)

(Cortancyl, Deltasone, Encorton) 4 more
Type
Prescription Drug
How many have tried
40
How many evaluations
15
Treatment name(s)

(Azapress, Azasan, Imuran) 2 more
Type
Prescription Drug
How many have tried
33
How many evaluations
13
Treatment name(s)

(VATS Lung Biopsy)
Type
Procedures
How many have tried
12
How many evaluations
2
Treatment name(s)

(Deltacortril, Econopred Plus, Omnacortil) 7 more
Type
Prescription Drug
How many have tried
7
How many evaluations
4
Treatment name(s)

(Budetrol, Forocort 200-Inhaler, Symbicort)
Type
Prescription Drug
How many have tried
4
How many evaluations
2
Treatment name(s)

(APO-Lorazepam, Ativan, Ativan SL) 7 more
Type
Prescription Drug
How many have tried
4
How many evaluations
1
See all 86 treatments
Data from patients with Pulmonary fibrosis, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

Compare treatments for Pulmonary fibrosis

You’ve tried
Treatment name(s)
How many have tried
Perceived effectiveness
Side effects
How many evaluations
Treatment name(s)
How many have tried
501
Perceived effectiveness
Side effects
Nosebleeds Runny nose (rhinorrhea) 7 more
How many evaluations
47
Treatment name(s)

(ACC 600, ACC Long, Acetylcyst) 17 more
How many have tried
92
Perceived effectiveness
Side effects
Hiccups (hiccoughs) when starting to eat/drink Stomach discomfort
How many evaluations
17
Treatment name(s)
How many have tried
62
Perceived effectiveness
Side effects
Shortness of breath with exertion
How many evaluations
11
Treatment name(s)

(Esbriet, IPF Phase III ASCEND (pirfenidone), IPF Phase III CAPACITY 1 (pirfenidone)) 3 more
How many have tried
60
Perceived effectiveness
Side effects
Acid reflux Nausea 19 more
How many evaluations
34
Treatment name(s)

(Cortancyl, Deltasone, Encorton) 4 more
How many have tried
40
Perceived effectiveness
Side effects
Weight gain Difficulty sleeping through night 31 more
How many evaluations
15
Treatment name(s)

(Azapress, Azasan, Imuran) 2 more
How many have tried
33
Perceived effectiveness
Side effects
Nausea and vomiting Abdominal bloating 9 more
How many evaluations
13
Treatment name(s)

(VATS Lung Biopsy)
How many have tried
12
Perceived effectiveness
Side effects
Allergic reaction to patch adhesive Shortness of breath (dyspnea)
How many evaluations
2
Treatment name(s)

(Deltacortril, Econopred Plus, Omnacortil) 7 more
How many have tried
7
Perceived effectiveness
Side effects
Chronic Hyperglycemia Elevated blood pressure
How many evaluations
4
Treatment name(s)

(Budetrol, Forocort 200-Inhaler, Symbicort)
How many have tried
4
Perceived effectiveness
Side effects
How many evaluations
2
Treatment name(s)

(APO-Lorazepam, Ativan, Ativan SL) 7 more
How many have tried
4
Perceived effectiveness
Side effects
Ataxia (lack of coordination) Dizziness 3 more
How many evaluations
1
See all 86 treatments
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 52
40s 191
50s 506
60s 1,052
70+ 1,203

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 22
40-49 years 90
50-59 years 205
60-69 years 194
70+ years 104

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 825
Not Diagnosed 41

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