Systemic lupus erythematosus

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 systemic lupus erythematosus?

Systemic lupus erythematosus is a chronic autoimmune disorder primarily involving connective tissue. It affects multiple systems including the skin, joints, kidneys, lungs, heart, and the peripheral blood cells. Treatments vary according to the area affected and may include drugs or supportive care.

Common symptoms reported by people with systemic lupus erythematosus

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 systemic lupus erythematosus

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

(Plaquenil)
Type
Prescription Drug
How many have tried
576
Tried for
systemic lupus erythematosus (575) fatigue (2)
4 more
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
382
Tried for
systemic lupus erythematosus (379) joint pain (5)
2 more
Treatment name(s)

(Apo-Methotrexate)
Type
Prescription Drug
How many have tried
138
Tried for
systemic lupus erythematosus (136) joint pain (3)
1 more
Treatment name(s)

(Benlysta)
Type
Prescription Drug
How many have tried
102
Treatment name(s)

(CellCept)
Type
Prescription Drug
How many have tried
92
Tried for
systemic lupus erythematosus (92) Pain (1)
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
83
Tried for
systemic lupus erythematosus (83) Pain (1)
Treatment name(s)

(Aleve)
Type
Over the Counter Drug
How many have tried
75
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
70
Tried for
Pain (63) muscle pain (24)
2 more
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
42
Tried for
Pain (38) systemic lupus erythematosus (4)
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
35
Tried for
Pain (35) joint pain (2)
2 more

Data from patients with systemic lupus erythematosus, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with systemic lupus erythematosus

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

(Plaquenil)
Perceived effectiveness
for systemic lupus erythematosus (250 evaluations)
Side effects
nausea diarrhea 85 more
Total evaluations
254
Tried for
systemic lupus erythematosus (575) fatigue (2)
4 more
Treatment name(s)

(Deltasone)
Perceived effectiveness
for systemic lupus erythematosus (143 evaluations)
Side effects
weight gain insomnia 104 more
Total evaluations
153
Tried for
systemic lupus erythematosus (379) joint pain (5)
2 more
Treatment name(s)

(Apo-Methotrexate)
Perceived effectiveness
for systemic lupus erythematosus (73 evaluations)
Side effects
nausea fatigue 49 more
Total evaluations
79
Tried for
systemic lupus erythematosus (136) joint pain (3)
1 more
Treatment name(s)

(Benlysta)
Perceived effectiveness
for systemic lupus erythematosus (56 evaluations)
Side effects
fatigue headaches 49 more
Total evaluations
56
Treatment name(s)

(CellCept)
Perceived effectiveness
for systemic lupus erythematosus (28 evaluations)
Side effects
nausea fatigue 29 more
Total evaluations
33
Tried for
systemic lupus erythematosus (92) Pain (1)
Treatment name(s)

(Imuran)
Perceived effectiveness
for systemic lupus erythematosus (33 evaluations)
Side effects
nausea nausea and vomiting 15 more
Total evaluations
38
Tried for
systemic lupus erythematosus (83) Pain (1)
Treatment name(s)

(Aleve)
Perceived effectiveness
for systemic lupus erythematosus (31 evaluations)
Side effects
stomach pain nausea 5 more
Total evaluations
31
Treatment name(s)

(Ultram)
Perceived effectiveness
for Pain (27 evaluations)
Side effects
constipation nausea 18 more
Total evaluations
40
Tried for
Pain (63) muscle pain (24)
2 more
Treatment name(s)

(Neurontin)
Perceived effectiveness
for Pain (13 evaluations)
Side effects
dizziness drowsiness 5 more
Total evaluations
13
Tried for
Pain (38) systemic lupus erythematosus (4)
Treatment name(s)

(Norco)
Perceived effectiveness
for Pain (18 evaluations)
Side effects
drowsiness sleepiness 4 more
Total evaluations
18
Tried for
Pain (35) joint pain (2)
2 more
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with systemic lupus erythematosus, who reported starting treatments within the last 5 years.
Last updated:

Who has systemic lupus erythematosus on PatientsLikeMe?


Age
Age Proportion # of patients
<20 137
20s 1,456
30s 4,591
40s 8,764
50s 7,634
60s 3,279
70+ 554
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1,835
20-29 years 2,126
30-39 years 2,265
40-49 years 1,382
50-59 years 467
60-69 years 84
70+ years 18

Sex

Distribution of sex

97% Female
3% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 9,213
Not Diagnosed 531

These charts show data from systemic lupus erythematosus patients who have completed their condition history
Last updated: