Suspected Lupus.. need advice

Posted , 6 users are following.

Hi i am looking for some advice, my sister had a phone call from her doctor today who stated that they believe she might have lupus due to the fact her blood clots. My sister suffered a cot death in October and since said the blood in her placenta was clotting which although not cause of deathled to the placenta to stop functioning at 100% she also suffers from alot of clotting during her monthly cycle which apparently comes every 2-3 weeks rather than more regularly.

Does anyone know if this sounds like lupus? I have tried looking it up but all I am finding is lupus is autoimmune and there are many different kinds and treatments. Although this call was only this morning I am wondering how they confirm this etc, and what next steps are as well as if anyone thinks this could well be lupus?

Thanks

Sam idea

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9 Replies

  • Posted

    I am having tests to confirm if I have Lupus and one of my antibodies is raised, the Antiphospholoid antibody. That antibody cause women to suffer from blood clots and increases the risk of miscarriage. It could be that your sisters is also raised and the antibody is commonly found in women who have Lupus.
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    • Posted

      She hasn't had any blood tests done yet she is waiting for an appointment to go for them, would this be done at hospital or just local doctors? Also what kinda treatment then do they offer for that kind of anitbody/type of lupus do you know? Know nothing about lupus really except research I've done today n all I can gather is it ranges from mild to extreme forms.x
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    • Posted

      I initially had blood tests at the hospital but I had that antibody blood test repeated last week at my doctors surgery. I don't know what they can do if the antibody is high. I'm not aware of any treatment.
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    • Posted

      I think from what research I have done they may issue a blood thinning medication but have advised against any further pregnancies as she is extemely high risk. Thanks for the advice x
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  • Posted

    Hi there, I think she needs a blood test to know for sure. That is how I found out. There are many forms of treatment depending on your condition, I'm on anti inflamatories for joint pain but it effects lots of things. Best to be sure it is lupus first! Hope you get sorted out xx

     

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    • Posted

      Hiya! Yeah she's going to go for the blood tests to be sure but I was just trying to get a bit of research and advice about it as it's something we know nothing about. We have been told she is extremely high risk of miscarriage / another cot death or having a baby born with 'difficulties' more than anyone else who's just had a cot death and I'm assuming it's to do with this reasoning and the blood clotting x
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  • Posted

    Yes I understand ..lupus has many issues I was diagnosed 17 years ago. I feel it may be but very hard to say. Lupus is quite hard to diagnose. I've heard the risk of miscarriage is high. Lupus runs in my family and more prone to females . I wish you both well. X

     

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  • Posted

    Hi Sam 

    After having 9 misscarriages i was diagnosed with aps/sle, i take asprin to thin my blood i was diagnosed some 23 years ago . your sister will need more bloods to be taken the main test is the ANA blood test. it is very hard to diagnose and your sister will have to have at least 4 symtoms of lupus plus blood results to determine Lupus . she will need to be referred to a rhumatologist who will ask for these tests to be done they are specialised test that they can ask for. Hope fully your sister does'nt have lupus as it can mimic other conditions such as fibromyalgia good luuck 

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  • Posted

    Hi sorry to hear your sisters sad loss it must be horrendous for her and all the family,

    Like everyone has said she needs to wait for blood test results, but completely understand your need to research this yourself,

    All I can say is as a young woman I had 3 miscarriages and suffered terribly with my periods I had clots of blood like liver every 10/12 days, I was worn out and restricted as to where I could go or what to wear, this went on for many years before having an hystorectomy in my late 30's

    Things settled down for a while then I started to become very ill with kidney infection after infection, after 2 years of tests I was diagnosed with Lupus SLE I was 42 then, when talking to my consultant one day miscarriages were mentioned and she now reckons I possibly had lupus since my late teens I'm now 57

    I also have fibromyalgia which was diagnosed 15 years ago to,

    The quicker your sister gets a diagnosis and gets the right treatment the better for her as stress is very bad for her if she has lupus,

    I wish her all the luck in the world and is lucky to have a supportive sister.

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