My blood tests in November showed very raised anti cardiolipin antibodies and slightly raised ESR. Had them repeated last week, and bloods in normal ranges. Does this mean I don't have lupus??? I have joint pains and fatigue all the time, I had red patches all over for about a month ( went few weeks ago ). Did have headaches, but not had one now since 7th April.
I'm at hospital to see neurologist again next week.
Any advice from anyone? What's going on??
Hi Rach5,
Anticardiolipin antibodies are a type of antiphospholipid antibody so are generally tested for when diagnosing antiphospholipid syndrome (APS, Hughes Syndrome, 'sticky blood'). Antiphospholipid antibodies are only found in approximately 50% of lupus patients.
Most people who have SLE have an elevated ESR; however many do not. Some SLE patients who have no active disease can also have an elevated ESR for no apparent reason. The test is most helpful to use in people who have an elevated ESR during times of disease activity and a normal ESR during periods of good disease control. ESR can be elevated due to reasons other than inflammation, such as anaemia, older age, being female, and being pregnant.
These test results would not rule out lupus. Have you had ANA and anti-dsDNA tests?
If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Thankyou, I have the information pack already. I had thought everything depended on these bloods last week. I'll talk to neurologist at hospital ( I see him for the headaches ), and the eye consultant at hospital ( was sent to her after sight test showed swollen optic discs).
Wonder if I can request to see a rheumatologist? I'm beginning to feel like a hypochondriac
Hi Rach5,
You should be able to request a referral to a rheumatologist. If you let me know what area you live in, I can tell you if there are any specialists nearby.
Gateshead, Tyne and Wear. It's right next to Newcastle upon Tyne
Hi Rach5, I have been very recently diagnosed with UCTD/possible emerging lupus by team at freeman. I have found the team willing to listen and offer treatment bases on history and symptoms, despite me not ticking all the diagnosis criteria. It seems getting a definitive diagnosis is a complex process and very frustrating at times. However I feel hopeful for the future and cannot criticise the care I have received so far. My GP also describes rheumatology team at freeman as one of the best in the country. Hope this helps, good luck x
Thanks, fab to know
Hi Rach5,
I believe your nearest lupus specialist would be Dr Bridget Griffiths at the Freeman Hospital in Newcastle.
Lupus anticoagulant is a test for APS/Antiphospholipid/Hughes syndrome/"sticky blood ". (Different names for the same disease)
Read the following websites for information
ANA negative lupus 
Lupus
Does this look like lupus rash?
What does 'mild fever' mean?
