Interstitial lung disease

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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.
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Treatments taken by people with interstitial lung disease

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)
Type
Prescription Drug
How many have tried
18
Tried for
interstitial lung disease (18)
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
16
Tried for
interstitial lung disease (16)
Treatment name(s)

(CellCept)
Type
Prescription Drug
How many have tried
9
Treatment name(s)
Type
Physical Therapy
How many have tried
7
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
4
Treatment name(s)

(Tylenol)
Type
Over the Counter Drug
How many have tried
2
Tried for
pain (2)
Treatment name(s)

(Celexa)
Type
Prescription Drug
How many have tried
2
Tried for
depressed mood (2)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
2
Tried for
pain (2)
Treatment name(s)

(Plaquenil)
Type
Prescription Drug
How many have tried
2
Treatment name(s)

(Provigil)
Type
Prescription Drug
How many have tried
2
Tried for
fatigue (2)

Data from patients with interstitial lung disease, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with interstitial lung disease

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)
Perceived effectiveness
for interstitial lung disease (13 evaluations)
Side effects
dry mouth dry nose 1 more
Total evaluations
15
Tried for
interstitial lung disease (18)
Treatment name(s)

(Deltasone)
Perceived effectiveness
for interstitial lung disease (8 evaluations)
Side effects
weight gain balance problems 17 more
Total evaluations
9
Tried for
interstitial lung disease (16)
Treatment name(s)

(CellCept)
Perceived effectiveness
for interstitial lung disease (7 evaluations)
Side effects
brain fog difficulty staying asleep 10 more
Total evaluations
12
Treatment name(s)
Perceived effectiveness
for interstitial lung disease (8 evaluations)
Side effects
fatigue muscle pain 1 more
Total evaluations
8
Treatment name(s)

(Imuran)
Perceived effectiveness
for interstitial lung disease (4 evaluations)
Side effects
decreased lung capacity gas pain 3 more
Total evaluations
5
Treatment name(s)

(Tylenol)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (2)
Treatment name(s)

(Celexa)
Perceived effectiveness
for depressed mood (3 evaluations)
Side effects
drowsiness
Total evaluations
3
Tried for
depressed mood (2)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (3 evaluations)
Side effects
Total evaluations
3
Tried for
pain (2)
Treatment name(s)

(Plaquenil)
Perceived effectiveness
No evaluations
Side effects
Total evaluations
1
Treatment name(s)

(Provigil)
Perceived effectiveness
for fatigue (4 evaluations)
Side effects
dry mouth esophageal spasms
Total evaluations
4
Tried for
fatigue (2)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with interstitial lung disease, who reported starting treatments within the last 5 years.
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Who has interstitial lung disease on PatientsLikeMe?


Age
Age Proportion # of patients
<20 2
20s 10
30s 24
40s 88
50s 110
60s 177
70+ 132
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 44
50-59 years 46
60-69 years 29
70+ years 7

Distribution of sex

Sex
Sex Proportion # of patients
Male 142
Female 407

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 242
Not Diagnosed 7

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