Sarcoidosis

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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 sarcoidosis?

Sarcoidosis is an inflammatory disease characterized by small lumps or granulomas. It usually invades the lungs with fibrosis and may also involve lymph nodes, skin, liver, spleen, eyes, phalangeal bones, and parotid glands.

Common symptoms reported by people with sarcoidosis

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 with sarcoidosis

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

(Deltasone)
Type
Prescription Drug
How many have tried
7
Tried for
sarcoidosis (7)
Treatment name(s)

(Trexall)
Type
Prescription Drug
How many have tried
4
Tried for
sarcoidosis (4)
Treatment name(s)

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

(Tylenol)
Type
Over the Counter Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
1
Tried for
fatigue (1) sarcoidosis (1)
Treatment name(s)

(BuSpar)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
1
Tried for
depressed mood (1)
Treatment name(s)

(Lexapro)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)
Treatment name(s)

(Plaquenil)
Type
Prescription Drug
How many have tried
1
Tried for
sarcoidosis (1)
Treatment name(s)

(Vistaril)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)

Data from patients with sarcoidosis, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with sarcoidosis

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

(Deltasone)
Perceived effectiveness
for sarcoidosis (2 evaluations)
Side effects
increased anxiety insomnia 3 more
Total evaluations
2
Tried for
sarcoidosis (7)
Treatment name(s)

(Trexall)
Perceived effectiveness
for sarcoidosis (3 evaluations)
Side effects
Total evaluations
3
Tried for
sarcoidosis (4)
Treatment name(s)

(Ultram)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (2)
Treatment name(s)

(Tylenol)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Adderall)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
fatigue (1) sarcoidosis (1)
Treatment name(s)

(BuSpar)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
anxious mood (1)
Treatment name(s)

(Cymbalta)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood (1)
Treatment name(s)

(Lexapro)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
anxious mood (1)
Treatment name(s)

(Plaquenil)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
sarcoidosis (1)
Treatment name(s)

(Vistaril)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
anxious mood (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with sarcoidosis, who reported starting treatments within the last 5 years.
Last updated:

Who has sarcoidosis on PatientsLikeMe?

  • 0 new patients joined this month
  • 327 say sarcoidosis is their primary condition

Age
Age Proportion # of patients
<20 2
20s 16
30s 42
40s 101
50s 197
60s 127
70+ 40
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 16
20-29 years 48
30-39 years 55
40-49 years 62
50-59 years 36
60-69 years 8
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 138
Female 385

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 292
Not Diagnosed 12

These charts show data from sarcoidosis patients who have completed their condition history
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