Interstitial lung disease

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 interstitial lung disease?

Interstitial lung disease is the name for a large group of diseases that inflame or scar the lungs. The inflammation and scarring make it hard to get enough oxygen. The scarring is called pulmonary fibrosis. Some types of interstitial lung disease have no known cause.

Common symptoms reported by people with interstitial lung disease

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, fatigue, pain, and stress) regardless of condition.
Last updated:

Treatments taken by people for interstitial lung disease

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Prednisone Intensol)
Type
Prescription Drug
How many have tried
337
Treatment name(s)

(transtracheal oxygen)
Type
Prescription Drug
How many have tried
234
Treatment name(s)
Type
Physical Therapy
How many have tried
114

Data from patients with interstitial lung disease, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
Last updated:

Compare treatments taken by people with interstitial lung disease

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Prednisone Intensol)
Perceived effectiveness
for interstitial lung disease (2 evaluations)
Side effects
weight gain acne
Total evaluations
2
Treatment name(s)

(transtracheal oxygen)
Perceived effectiveness
for interstitial lung disease (2 evaluations)
Side effects
dry nasal passages
Total evaluations
2
Treatment name(s)
Perceived effectiveness
for interstitial lung disease (5 evaluations)
Side effects
muscle pain
Total evaluations
5
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with interstitial lung disease, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
Last updated:

Who has interstitial lung disease on PatientsLikeMe?

  • 1 new patients joined this month
  • 387 say interstitial lung disease is their primary condition

Age
Age Proportion # of patients
<20 3
20s 8
30s 19
40s 83
50s 110
60s 186
70+ 183
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 6
20-29 years 8
30-39 years 27
40-49 years 46
50-59 years 47
60-69 years 31
70+ years 7

Distribution of sex

Sex
Sex Proportion # of patients
Male 159
Female 441

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 249
Not Diagnosed 7

These charts show data from interstitial lung disease patients who have completed their condition history
Last updated: