Antiphospholipid antibody syndrome

We’re all in this for good.

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 antiphospholipid antibody syndrome?

Antiphospholipid syndrome, Hughes syndrome, or antiphospholipid antibody syndrome is a disorder that causes blood clots (thrombosis) to form in the arteries, veins, and vital organs.

Common symptoms reported by people with antiphospholipid antibody syndrome

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 antiphospholipid antibody syndrome

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

(Coumadin)
Type
Prescription Drug
How many have tried
7
Treatment name(s)

(Aspirin Low Dose)
Type
Over the Counter Drug
How many have tried
6
Treatment name(s)

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

(Flexeril)
Type
Prescription Drug
How many have tried
3
Tried for
pain (3)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
3
Tried for
pain (3)
Treatment name(s)

(Lyrica)
Type
Prescription Drug
How many have tried
3
Tried for
pain (3)
Treatment name(s)

(Xarelto)
Type
Prescription Drug
How many have tried
3
Treatment name(s)

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

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

(Lovenox)
Type
Prescription Drug
How many have tried
2

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

Compare treatments taken by people with antiphospholipid antibody syndrome

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

(Coumadin)
Perceived effectiveness
for antiphospholipid antibody syndrome (3 evaluations)
Side effects
abdominal bloating constipation 8 more
Total evaluations
3
Treatment name(s)

(Aspirin Low Dose)
Perceived effectiveness
for antiphospholipid antibody syndrome (1 evaluation)
Side effects
Total evaluations
1
Treatment name(s)

(Plaquenil)
Perceived effectiveness
for antiphospholipid antibody syndrome (1 evaluation)
Side effects
Total evaluations
2
Treatment name(s)

(Flexeril)
Perceived effectiveness
for pain (3 evaluations)
Side effects
drowsiness sleepiness
Total evaluations
3
Tried for
pain (3)
Treatment name(s)

(Neurontin)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (3)
Treatment name(s)

(Lyrica)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (3)
Treatment name(s)

(Xarelto)
Perceived effectiveness
for antiphospholipid antibody syndrome (1 evaluation)
Side effects
Total evaluations
1
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (2 evaluations)
Side effects
depressed mood fatigue 2 more
Total evaluations
3
Tried for
anxious mood (2)
Treatment name(s)

(Cymbalta)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood (2)
Treatment name(s)

(Lovenox)
Perceived effectiveness
for antiphospholipid antibody syndrome (1 evaluation)
Side effects
excessive bleeding
Total evaluations
1
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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

Who has antiphospholipid antibody syndrome on PatientsLikeMe?


Age
Age Proportion # of patients
<20 4
20s 39
30s 123
40s 198
50s 192
60s 84
70+ 19
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 48
20-29 years 103
30-39 years 92
40-49 years 49
50-59 years 16
60-69 years 6
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 59
Female 605

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 429
Not Diagnosed 14

These charts show data from antiphospholipid antibody syndrome patients who have completed their condition history
Last updated: