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Well seems I have tested twice for lupus. But don't actually have lupus sle. I have lupus antibodies they said so I have to come of my contraceptive pill to prevent clotting. Was given tablets for my raynauds and back on gabapentin for my fibro. Doc said fibro worsening but nothin they can do so need to live with it. So this is what they are saying. No lupus!!! Still little confused but hey ho. Since starting these other tabs I've had a migraine since wed 😢

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  • But there is no definitive blood test for Lupus. What criteria is your doctor using? What country are you in?

  • Hi. I am in Scotland. They done two tests for lupus both were positive. But they said I only have lupus anticologant which can cause clotting.

  • Good morning Sarah x I am new on here but had to pop up and ask if you have told your doctor or pharmisist about your headache? If you have not please call out of hours for advice, this morning. These conditions are bad enough to live with and it often it takes time to get the right medication but if any causes a chronic worsening or chronic new symptoms you should ask for assistance. Please all the very best X

  • Hi

    Could it be you test positive for lupus anticoagulant? That would possibly fit in with what you are saying about the contraceptive pill if it was the combined pill.

    Lupus anticoagulant isn't actually lupus but an Antiphospholipid antibody that can make your blood more prone to clotting, hence why they would make you stop taking any estrogen products. I believe it was first noted in lupus patients hence the name but it is found in non lupus people too, so the name is a bit of a misnomer.

    You can look up Antiphospholipid syndrome (APS) but it's also know as Hughes Syndrome.

    arthritisresearchuk.org/art...

    The tests can be confusing.

    All the best

    L x

  • Hi everyone. Was at two hospitals last night for to be told to take my gabapentin and brufen for my migraine. Infact doctor in hospital said it's JUST a headache. I was furious. Because I have lupus anticologant she wanted me to stay over night and have special scan on vessels in back if my neck. Wouldn't guarantee it would be done this morning either. After four hours of being at hosp with migraine I was put in loud room with no water or cold compress or nothing. Two doctors told me two diff things about my medication. So don't trust being there or feel relaxed so I signed myself out and come home. Will go see my gp tomorrow and get them to refer me for the scan 😤 Woke up today with head still the same

  • Hi

    I do think they need to take your migraine more seriously. Especially with Hughes syndrome. Scans do not always show things up, I am forever having scans and some TIAs don't show up.

    Have you managed to have a look at the link about the syndrome?

    There is a group on here that is called stickyblood - Hughes syndrome. That is dedicated and the best place for answers. I would join there instead of this one and ask for help.

    I know how you are feeling though and I wish you all the best.

    L x

  • Hi xSarahx

    If you have tested positive to Lupus anticoagulant you may have Hughes Syndrome also called antiphospholipid Syndrome or "sticky blood". You need a specialist doctor who understands this condition. Your headaches could be a symptom. More information in the following links.

    healthunlocked.com/hughes-s...

    aps-support.org.uk

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