Scleroderma

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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 scleroderma?

Scleroderma is a rare chronic autoimmune disease characterized by hardening (fibrosis) and vascular abnormalities. It is a multisystem condition that can involve the skin, joints, and internal organs, including the upper and lower digestive tract, lung, heart, and kidneys.

Common symptoms reported by people with scleroderma

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 scleroderma

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

(CellCept)
Type
Prescription Drug
How many have tried
13
Tried for
scleroderma (13)
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
6
Tried for
Pain (6)
Treatment name(s)

(Plaquenil)
Type
Prescription Drug
How many have tried
5
Tried for
scleroderma (5)
Treatment name(s)

(Apo-Methotrexate)
Type
Prescription Drug
How many have tried
5
Tried for
scleroderma (5)
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
4
Tried for
scleroderma (4)
Treatment name(s)

(Zoloft)
Type
Prescription Drug
How many have tried
3
Tried for
depressed mood (3)
Treatment name(s)

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

(Imuran)
Type
Prescription Drug
How many have tried
2
Tried for
scleroderma (2)
Treatment name(s)

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

(Cytoxan)
Type
Prescription Drug
How many have tried
2
Tried for
scleroderma (2)

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

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

(CellCept)
Perceived effectiveness
for scleroderma (7 evaluations)
Side effects
diarrhea black stools 12 more
Total evaluations
12
Tried for
scleroderma (13)
Treatment name(s)

(Ultram)
Perceived effectiveness
for Pain (4 evaluations)
Side effects
brain fog constipation 3 more
Total evaluations
4
Tried for
Pain (6)
Treatment name(s)

(Plaquenil)
Perceived effectiveness
for scleroderma (2 evaluations)
Side effects
hair loss itching 1 more
Total evaluations
2
Tried for
scleroderma (5)
Treatment name(s)

(Apo-Methotrexate)
Perceived effectiveness
for scleroderma (2 evaluations)
Side effects
dizziness fatigue
Total evaluations
2
Tried for
scleroderma (5)
Treatment name(s)

(Deltasone)
Perceived effectiveness
for scleroderma (2 evaluations)
Side effects
weight gain
Total evaluations
2
Tried for
scleroderma (4)
Treatment name(s)

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

(Abilify)
Perceived effectiveness
for depressed mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
depressed mood (2)
Treatment name(s)

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

(Klonopin)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
dry mouth
Total evaluations
1
Tried for
anxious mood (2)
Treatment name(s)

(Cytoxan)
Perceived effectiveness
for scleroderma (1 evaluation)
Side effects
Total evaluations
1
Tried for
scleroderma (2)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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


Age
Age Proportion # of patients
<20 2
20s 29
30s 63
40s 179
50s 253
60s 176
70+ 40
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 31
20-29 years 37
30-39 years 71
40-49 years 93
50-59 years 46
60-69 years 12
70+ years 2

Sex

Distribution of sex

91% Female
9% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 373
Not Diagnosed 18

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