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Lupus Survey Results

 

Male 4 %
Female 96 %

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?

Yes 46 %
No 49 %

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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