Do I have lupus

Hi all. Just a bit of history about me.

I've had raynauds since being a teenager, diagnosed with ckd stage 4 10 years ago. Scans revealed only 1 kidney with multiple cycst. Now at stage 5 11% function having multiple issues with pleurisy, pneumonia, gaute and many more symptoms.

Anyway 2 days before my 40 birthday in crete I had a mini stroke. Done some home work and all is pointing towards lupus. Docs did blood test and 2 results were showing inflammation waiting for another mri to see if there is any inflammation on my brain.

I don't have the butterfly rash so could it be lupus or something else?

4 Replies

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  • buryboy did they do the tests for Antiphospholipid Syndrome or Hughes Syndrome? its possible that you may have sticky blood caused by this condition which is a sort of cousin of Lupus. It might be worth mentioning to your medical team and ask for the following tests to be done but make sure they are at a Hospital as they are time critical and you don't want them hanging around in a Dr's surgery.

    There are three main blood tests used to diagnose APS and they are all looking for antiphospholipid antibodies (aPL):

    Anticardiolipin antibodies (aCL)

    Lupus anticoagulant (LA)

    Anti-beta2-glycoprotein-1 (anti-B2GP1)

    As the name portrays APS is a syndrome so many of your symptoms, Raynaulds etc are common. Also Kidneys are often affected. Anyway get tested first before you jump the gun. If you do test positive there is a Hughes Forum on HU were you can find support and get names of specialists.

  • At the moment it is my kidney specialist that's helping. 1 of the tests was crp I think something to do with protein, the results were 6.6 but should be no higher than 3.0 . This means I have a lot of inflation in my body.

  • Hi buryboy,

    Not everybody with lupus will develop a butterfly rash - only about 40-60% of people with SLE will, so it doesn't rule out lupus as a possibility.

    Do you know if they have done any blood tests looking for lupus antibodies such as antinuclear antibodies (ANA) or anti-dsDNA antibodies? Are you being referred to a rheumatologist for further investigations?

    If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download at lupusuk.org.uk/request-info...

  • Last week I seen a stroke doctor and he said 2 blood results came back postative. I had an mri and an mra in August he wants to carry out the mri again to see if their is any inflammation on the brain. It was my kidney specialist that did the blood tests and I will be seeing her later this month. Also my gp thinks I could be right but nobody has referred me to a rheumatologist.

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