How long did it take for you to get a definitive diagnosis of lupus?

This should be the time from the first symptoms and you going to a medical professional to find out what was causing them to the point where you were told it was lupus.

10 Replies

  • For me the whole process took around 4 years from the first time I noticed something wasn't right to finally being referred to St Thomas'. I experienced overwhelming and debilitating fatigue followed by various infections and night sweats. I eventually ended up with severe joint pain, was tested for RA and told I do not have RA and they just left it there. I then went back to my GP and said I can't live like this anymore you have to find out what is wrong with me. I was then referred to a rheumy and she finally diagnosed me. Knowing what I know now, it was so obvious I had Lupus! But at the time I'd never even heard of it so there as no way of me knowing. GP's need to be better informed about Lupus and it's symptoms as I must have seen 15 different GP's before the last one took me seriously.

  • Interesting Faye - that's exactly how long it took me - and believe it or not that's the average time for diagnosis which is pretty shocking!

  • It was 3 years for me. Mine was hidden behind my Antiphospholipid Syndrome (APS) they think for at least 3 years before that though. It was a relief to know the diagnosis in the end as I knew it wasn't my APS as the pain levels and big rash on my face weren't the usual thing for me. My GP's missed it entirely but the gynae surgeon noticed it and referred me to Rheumy.

  • It was about 1 year for me. I started with fatigue in January 2009. I didn't see the GP until April, when I developed a rash. By the June my rash was widespread and painful. My GP got me an emergency (same day) appointment at the dermatology department. I was diagnosed there and then with urticarial vasculitis. This was later confirmed when the biopsy results, performed that day, came back. A few weeks later blood test results, from bloods taken on that first appointment, showed I had a positive ANA, DsDNA, Ro and La.

    In the October I saw my rheumatologist. By then I'd developed other symptoms too. By the following January, with monitoring of my symptoms and bloods, she confirmed I had SLE and Sjogren's.

    I was very lucky to have a very switched on GP, dermatologist and I have a wonderful rheumatologist. I couldn't be in better hands.

  • Yay - well done the whole medical team especially your GP, that was quite a fast diagnosis.

  • Absolutely. I'm well looked after and my GP and rheumatologist are great! I feel very fortunate.

  • I was really fortunate and got a diagnosis very quickly. I saw my GP when I was 8 weeks pregnant as a small rash on my face had spread rapidly across my whole face, legs and arms. I had also lost a patch of hair behind one ear. She asked about aches and pains and i explained that I had lots of joint pain but put it down to previous injuries in a car accident. My GP sent me for blood tests and made an urgent referral to a dermatologist. She said at the time that she had an idea what it was, but didn't say. I saw the dermatologist within a week and they diagnosed me then and made an urgent referral to rheumatology. I was seen by them two days later. I had symptoms for about a year before this, which I hadn't pieced together and hadn't seen a doctor about.

  • With hindsight my rheumatologist and I agree that it probably took about 9 years from first symptoms to diagnosis. I had various conditions through my teens - migraines, acute anaemia etc. that all went unexplained despite hundreds of tests and trial treatments. Even when I developed really bad fatigue, the GP put it down to depression. It was only when I then developed joint pain that she finally tested me and I got a diagnosis 16 months ago at age 23. I think I've been really unlucky with healthcare practitioners. I don't know if it's because I'm out in the countryside but all my doctors and specialists seem to not know anything about lupus, there's a lot of umming and ahhing and consulting books. Maybe I need to move to a city!

  • To be honest - diagnosis seems to be hit and miss and whether you just happen to fall lucky or not with who you see. It doesn't seem to make that much difference city or country - it really is sadly a bit of a lottery :o)

  • It took 10 years for me to get diagnosed. In those ten years, the Lupus seems to have targeted my lungs mostly. I've had pneumonia three times, bronchitis 15 times, and pleurisy too many times to count in the last ten years. I have also had continual pain in my shoulders, wrists, hips and knees, and sometimes in my fingers. I have headaches and confusion and poor short term memory. I was first diagnosed with chronic fatigue ten years ago, then I was diagnosed with fibromyalgia, then I developed type 2 diabetes and gained so much weight. After gaining weight, doctors just assumed my problem was a weight problem and refused to listen when I tried to explain my weight gained was because of the problem and not the cause of it. I am one of the few who gains weight rapidly instead of losing it rapidly with Lupus :( I then got severely depressed and was hospitalized for it. After getting better insurance and switching doctors to a good doctor, it was still a year before she actually sat down with me and examined the last 15 or so year medical history with me. After doing that, she ordered the ANA without my knowledge, and after that coming back positive, she ordered a few more indicating tests and then called me in. She diagnosed Lupus (SLE) and RA. Thankfully, I don't have kidney or liver damage, but there is a question about my heart and lungs and nervous system. I am torn between the relief I feel after ten years of being invalidated by crapazoid doctors, and the intense anger I feel about suffering for so long. I wish I could go back to those doctors and show them. Jerks. But on the other hand, I am so very grateful for my doctor. I am so grateful she took the time to really examine my symptoms and that she listened. I'm grateful she ordered the blood tests and that now I feel safe to have open conversations with her, for example: I didn't tell her about my butterfly rashes because I assumed she would invalidate me. It turns out I have 6 of the 11 qualifiers including positive blood tests. So, there's my diagnosis story...

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