CNS lupus

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 CNS lupus?

Central nervous system (CNS) lupus refers to several different neurological and/or behavioral clinical syndromes in patients with systemic lupus erythematosus (SLE). The brain and spinal cord may be affected with a variety of presentations from mild cognitive dysfunction to seizures, stroke or coma.

Common symptoms reported by people with CNS lupus

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 CNS lupus

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

(Norco)
Type
Prescription Drug
How many have tried
6
Tried for
pain (6)
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
6
Tried for
CNS lupus (6)
Treatment name(s)

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

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

(Imuran)
Type
Prescription Drug
How many have tried
3
Tried for
CNS lupus (3)
Treatment name(s)

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

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

(CellCept)
Type
Prescription Drug
How many have tried
3
Tried for
CNS lupus (3)
Treatment name(s)

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

(Remeron)
Type
Prescription Drug
How many have tried
2
Tried for
depressed mood (2)

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

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

(Norco)
Perceived effectiveness
for pain (2 evaluations)
Side effects
nausea
Total evaluations
2
Tried for
pain (6)
Treatment name(s)

(Deltasone)
Perceived effectiveness
for CNS lupus (2 evaluations)
Side effects
weight gain anxious mood 2 more
Total evaluations
2
Tried for
CNS lupus (6)
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (2 evaluations)
Side effects
nausea sinus bradycardia
Total evaluations
2
Tried for
pain (6)
Treatment name(s)

(Apo-Methotrexate)
Perceived effectiveness
No evaluations
Side effects
dizziness flushing
Total evaluations
2
Tried for
CNS lupus (5)
Treatment name(s)

(Imuran)
Perceived effectiveness
for CNS lupus (2 evaluations)
Side effects
nausea and vomiting
Total evaluations
2
Tried for
CNS lupus (3)
Treatment name(s)

(Voltaren Gel)
Perceived effectiveness
for pain (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain (3)
Treatment name(s)

(Ativan)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
anxious mood (3)
Treatment name(s)

(CellCept)
Perceived effectiveness
for CNS lupus (1 evaluation)
Side effects
excessive dry mouth low white blood cell count (leukopenia)
Total evaluations
3
Tried for
CNS lupus (3)
Treatment name(s)

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

(Remeron)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood (2)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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


Age
Age Proportion # of patients
<20 12
20s 63
30s 198
40s 419
50s 334
60s 120
70+ 18
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 18
20-29 years 19
30-39 years 28
40-49 years 20
50-59 years 10
60-69 years 0
70+ years 1

Sex

Distribution of sex

97% Female
3% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 108
Not Diagnosed 21

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