Catastrophic antiphospholipid syndrome (CAPS)

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What is catastrophic antiphospholipid syndrome (CAPS)?

Catastrophic antiphospholipid syndrome is a rare complication of antiphospholipid antibody syndrome. It is characterized by the development of multiple blood clots that block small blood vessels in several organs in the body, most commonly the heart, lungs, nervous system, and kidneys.

Common symptoms reported by people with catastrophic antiphospholipid syndrome (CAPS)

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 catastrophic antiphospholipid syndrome (CAPS)

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

(Sintrom)
Type
Prescription Drug
How many have tried
1
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Tylenol with Codeine #3)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Fragmin)
Type
Prescription Drug
How many have tried
1
Treatment name(s)

(Dilaudid)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Keppra)
Type
Prescription Drug
How many have tried
1
Treatment name(s)

(Lidocaine Infusion)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Cesamet)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Pamelor)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

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

Data from patients with catastrophic antiphospholipid syndrome (CAPS), who reported starting treatments within the last 5 years.
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Compare treatments taken by people with catastrophic antiphospholipid syndrome (CAPS)

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

(Sintrom)
Perceived effectiveness
for catastrophic antiphospholipid syndrome (CAPS) (1 evaluation)
Side effects
Total evaluations
1
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (2 evaluations)
Side effects
increased pain
Total evaluations
3
Tried for
pain (1)
Treatment name(s)

(Tylenol with Codeine #3)
Perceived effectiveness
for pain (1 evaluation)
Side effects
constipation
Total evaluations
1
Tried for
pain (1)
Treatment name(s)

(Fragmin)
Perceived effectiveness
for catastrophic antiphospholipid syndrome (CAPS) (1 evaluation)
Side effects
bruising
Total evaluations
1
Treatment name(s)

(Dilaudid)
Perceived effectiveness
for pain (5 evaluations)
Side effects
tired for a few hours after treatment
Total evaluations
5
Tried for
pain (1)
Treatment name(s)

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

(Lidocaine Infusion)
Perceived effectiveness
for pain (3 evaluations)
Side effects
dizziness and feeling faint
Total evaluations
3
Tried for
pain (1)
Treatment name(s)

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

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

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

Data from patients with catastrophic antiphospholipid syndrome (CAPS), who reported starting treatments within the last 5 years.
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Who has catastrophic antiphospholipid syndrome (CAPS) on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 2
30s 3
40s 1
50s 3
60s 1
70+ 0
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 2
20-29 years 2
30-39 years 0
40-49 years 0
50-59 years 1
60-69 years 0
70+ years 0

Sex

Distribution of sex

70% Female
30% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 7
Not Diagnosed 1

These charts show data from catastrophic antiphospholipid syndrome (CAPS) patients who have completed their condition history
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