The Lived Experience of Lupus Flares: Features, Triggers, and Management in an Australian Female Cohort
Table 2
Patient reported flare frequency and symptoms.
Borderline SLE ACR 3+1 ()
SLE ACR 4+ ()
All patients ()
Mean ± SD
Mean ± SD
Mean ± SD
Flare days calculated count
32.9 ± 38.7
29.2 ± 39.0
29.9 ± 38.8
Number (%)
Number (%)
Number (%)
Flare day groups
Any events
21 (100)
68 (85)
89 (88.1)
No events
12 (15)
12 (11.9)
<50 flare days
17 (81)
53 (66.3)
70 (69.3)
50–150 flare days
4 (19.1)
13 (16.3)
17 (16.8)
>150 flare days
2 (2.5)
2 (2)
Flare frequency since management*
Decreased
9 (42.9)
54 (67.5)
63 (62.4)
Increased
4 (19.1)
10 (12.5)
14 (13.9)
Remained the same
8 (38.1)
16 (20)
24 (23.8)
General health since diagnosis**
Remained the same
3 (13.6)
18 (22.2)
21 (20.6)
Improved
13 (59.1)
38 (46.9)
51 (50.0)
Deteriorated
5 (22.7)
24 (29.6)
29 (28.4)
Reported symptom exacerbation***
Joint and muscle pain
18 (85.7)
56 (70)
74 (73.3)
Fatigue
12 (57.1)
54 (67.5)
66 (65.4)
Rash
5 (23.8)
25 (31.3)
30 (29.7)
Headaches
5 (23.8)
19 (23.8)
24 (23.8)
Fevers
4 (19.0)
11 (13.8)
15 (14.9)
Joint swelling
4 (19.1)
11 (13.8)
15 (14.9)
Abdomen/gastrointestinal
4 (19.1)
10 (12.5)
14 (13.9)
Brain fog/cognitive clouding
1 (4.8)
11 (13.8)
12 (11.9)
UV sensitivity
2 (9.5)
9 (11.3)
11 (10.9)
Shortness of breath
3 (14.3)
7 (8.8)
10 (9.9)
Raynaud’s episodes increase
1 (4.8)
9 (11.3)
10 (9.9)
Infection
3 (14.3)
7 (8.8)
10 (9.9)
Chest pain
1 (4.8)
8 (10)
9 (8.9)
Skin dryness
3 (14.3)
6 (7.5)
9 (8.9)
Skin changes
3 (14.3)
5 (6.3)
8 (7.9)
Dizzy spells
3 (14.3)
5 (6.3)
8 (7.9)
Ulcers
1 (4.8)
6 (7.5)
7 (6.9)
Muscle weakness
7 (8.8)
7 (6.9)
Alopecia
1 (4.8)
5 (6.3)
6 (5.9)
Sleep disturbance
2 (9.5)
3 (3.8)
5 (5)
Neuralgia
4 (5)
4 (4)
Vision changes
1 (4.8)
3 (3.8)
4 (4)
Sore throat
3 (14.3)
1 (1.3)
4 (4)
Depression, anxiety, stress
1 (4.8)
2 (2.5)
3 (3)
Change of mood
3 (3.8)
3 (3)
Serositis
2 (2.5)
2 (2)
Anaemia
2 (2.5)
2 (2)
Seizures
2 (2.5)
2 (2)
Anorexia
2 (2.5)
2 (2)
Has the number of events increased or decreased with ongoing management? **In your opinion, since your diagnosis, has your general health improved, remained the same, or deteriorated? ***What symptoms have been exacerbated?
