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.
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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
11
Tried for
sarcoidosis (11)
Treatment name(s)

(Apo-Methotrexate)
Type
Prescription Drug
How many have tried
6
Tried for
sarcoidosis (6)
Treatment name(s)

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

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

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

(Marijuana)
Type
Other
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Soma)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)

Data from patients with sarcoidosis, who reported starting treatments within the last 5 years.
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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 (5 evaluations)
Side effects
weight gain edema (fluid retention) 12 more
Total evaluations
5
Tried for
sarcoidosis (11)
Treatment name(s)

(Apo-Methotrexate)
Perceived effectiveness
for sarcoidosis (1 evaluation)
Side effects
bad taste in mouth fatigue 3 more
Total evaluations
1
Tried for
sarcoidosis (6)
Treatment name(s)

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

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

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

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

(Soma)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (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.
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Who has sarcoidosis on PatientsLikeMe?


Age
Age Proportion # of patients
<20 3
20s 10
30s 31
40s 113
50s 150
60s 96
70+ 21
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 17
20-29 years 48
30-39 years 53
40-49 years 56
50-59 years 34
60-69 years 5
70+ years 0

Sex

Distribution of sex

76% Female
24% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 260
Not Diagnosed 12

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