REPLIES
(by country)
| |
USA |
UK |
OTHER |
| |
200 |
23 |
22
(Australia-4, Brazil-1, Canada-10, Indonesia-1,
Mexico-2, Holland-1, China-1, Egypt-1, Denmark-1) |
| How long did it take from the first symptoms
starting until you were diagnosed? |
| less than 6 mths |
23 % |
4 % |
23 % |
| 6 mo - 1 yr |
11 % |
22 % |
9 % |
| 1 yr - 18 mo |
4 % |
9 % |
5 % |
| 18 mo - 2 yrs |
6 % |
9 % |
9 % |
| 2 - 3 yrs |
10 % |
9 % |
5 % |
| 3 - 4 yrs |
6 % |
9 % |
14 % |
| 4 - 5 yrs |
11 % |
0 % |
0 % |
| 5 - 7 yrs |
5 % |
13 % |
9 % |
| 7 - 10 yrs |
8 % |
4 % |
18 % |
| 10+ yrs |
18 % |
22 % |
9 % |
| Are you currently under the care of... |
| Rheumatologist |
84 % |
74 % |
68 % |
| Nephrologist |
11 % |
17 % |
5 % |
| Dermatologist |
14 % |
13 % |
18 % |
| Neurologist |
8 % |
4 % |
5 % |
| Endocrinologist |
0.5 % |
0 % |
0 % |
| Orthopedic |
2 % |
0 % |
0 % |
| Psychiatrist |
2 % |
0 % |
5 % |
| None/GP |
7 % |
9 % |
14 % |
SYMPTOMS (not by country)
| |
Before diagnosis |
After diagnosis |
| joint pain |
88 % |
94 % |
| arthritis |
55 % |
67 % |
| muscle pain |
71 % |
81 % |
| hair loss |
34 % |
47 % |
| anaemia |
33 % |
32 % |
| positive ana test |
59 % |
67 % |
| weight loss |
40 % |
24 % |
| weight gain |
28 % |
56 % |
| cardiac involvement |
18 % |
27 % |
| cns involvement |
20 % |
35 % |
| eye problems |
26 % |
42 % |
| discoid rash |
29 % |
36 % |
| malar rash |
42 % |
50 % |
| DNA antibodies |
30 % |
42 % |
| fatigue |
87 % |
95 % |
| fever |
62 % |
57 % |
| headache |
62 % |
67 % |
| low complement |
14 % |
24 % |
| positive skin biopsy |
11 % |
10 % |
| protein in urine |
31 % |
37 % |
| myositis |
32 % |
41 % |
| pericarditis |
13 % |
19 % |
| oral ulcers |
42 % |
50 % |
| nasal ulcers |
22 % |
29 % |
| photosensitivity |
55 % |
64 % |
| low platelets |
21 % |
23 % |
| seizures |
7 % |
10 % |
| Raynaud's |
33 % |
41 % |
| pneumonitis |
13 % |
10 % |
| pleurisy |
27 % |
28 % |
| kidney involvement |
14 % |
21 % |
Which of the following medications are you currently taking ...?
| NSAIDS (Ibuprofen, Relafen) |
51 % |
| antimalarials (Plaquenil) |
53 % |
| steroids (Prednisone) |
46 % |
| cytotoxic (Imuran, Methotrexate) |
24 % |
| pain medications |
48 % |
| anti-depressants |
36 % |
| none |
5 % |
Have
you ever been in remission?
How long for? (% of those who have been in remission)
| 1 - 6 mos |
27 % |
| 6 - 12 mos |
16 % |
| 1 - 2 yrs |
19 % |
| 2 - 3 yrs |
8 % |
| 3 - 4 yrs |
5 % |
| 4 - 5 yrs |
6 % |
| 5 - 7 yrs |
4 % |
| 7 - 10 yrs |
1 % |
| 10+ yrs |
8 % |
Have you also been diagnosed with...?
| Sjogren's Syndrome |
16 % |
| Fibromyalgia |
29 % |
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Lupus & Infections 
Lupus in Men