Pulmonary fibrosis

We’re all in this for good.

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
Tramadol, Acetaminophen (Paracetamol), Codeine-Acetaminophen
Non-invasive Ventilator, Trazodone, Ibuprofen
Melatonin, Trazodone, Diphenhydramine
Citalopram, Mirtazapine, Venlafaxine
Alprazolam, Clonazepam, Diazepam
Oxygen Concentrator, CT Scan Chest, No treatments
Guaifenesin, Benzonatate, Budesonide-Formoterol
Tiotropium Oral Inhalation, Oxygen Concentrator, No treatments
No treatments

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

Treatments reported by members Perceived effectiveness Overall rating of side effects # of Evaluations
23

(Pulmison, Pronizon, Deltasone, Encorton)

16

(NOW N-acetylcysteine, Jarrow Formulas N-A-C, Solal N-Acetyl-Cysteine, ACC Long)

11

(Pirespa, IPF Phase III CAPACITY 2 (pirfenidone), IPF Phase III ASCEND (pirfenidone), IPF Phase III CAPACITY 1 (pirfenidone))

10

(Imurek, Azasan, Imuran, Azapress)

9
6

These charts show data from PF patients’ latest treatment evaluations
Last updated:

  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Who has Pulmonary fibrosis on PatientsLikeMe?

  • 2,179 patients have this condition
  • 90 new patients joined this month
  • 2,057 say PF is their primary condition

Age
Age Proportion # of patients
<20 5
20s 26
30s 37
40s 144
50s 364
60s 717
70+ 750

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 9
30-39 years 21
40-49 years 69
50-59 years 159
60-69 years 138
70+ years 79

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 598
Not Diagnosed 30

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