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Thread: Lupus Anticoagulant

  1. #1

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    Default Lupus Anticoagulant

    Does anyone know anything about Lupus anticoagulant? I have now had 2 tests for this 6 weeks apart and both ofthem have come back inconclusive. Has anyone had this? I have had 2 m/cs in a row, and understand that this may be one of the causes


  2. #2

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    Hi EJE

    I am so sorry to hear that you have had two miscarriages, even one is one too many. My great aunt has Lupus (and has a gorgeous adult daughter), it's not a nice disease to have, but if you have it one test should be conclusive, at least, and you should have other signs. Lupus is an autoimmune disease whereby the body recognises itself as foreign and attacks the organs - so yes, it could attack a placenta/foetus, but you may have had other signs by now.

    The UK lupus site has a fantastic pdf pamphlet you can download on lupus and pregnancy - basically it says that:

    Quote Originally Posted by UKLupus.com
    Recurrent Miscarriages

    Lupus Patients should all be tested for antiphospholipid antibodies (see antiphospholipid (Hughes) Syndrome). If these tests are positive there is an increased risk of miscarriage and patients are treated accordingly - either with aspirin or heparin during the pregnancy. In those patients with lupus who are anticardiolipin negative it is probably true to say that there is not an increased risk of spontaneous miscarriage.

    Will my baby be fine?
    Lupus mothers have normal babies. However, there is one congenital problem which has been described in rare cases. Approximately 1 in 1000 babies (0.1% of babies) of lupus mothers are born with a slow pulse rate, so-called congenital heart block. This congenital abnormality is only seen in offspring of mothers with a particular antibody - antiRo (see fact sheet on Lupus and Laboratory Tests).
    Anyway, to demystify some science, the phospholipid stuff is the stuff that forms a protective layer and surrounds your cells, holds them together and lets the antibodies recognise the cell (basically, imagine a balloon that can say "hi, I'm me" or "hi, I'm a nasty flu bug" - the surface of that balloon is made up of phospholipids).

    Cardiolipin is a particular type of phospholipid - a normal one has 2 "tails", these tails sit inside the cell; cardiolipins have four (2 inside, 2 outside), they're the type that allow easy recognition of who the cell is.

    Ro is a nuclear antibody, so found inside the cell near all the DNA and can sometimes mess up the signalling and recognition process.

    I hope that some of this was helpful.

  3. #3

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    Question

    Thanks for the reply Ryn-Frog. I dont actually have Lupus, I have Lupus anticoagulant, which is named the same but not in fact in any way related to Lupus. My understanding is Lupus anticoagulant or Lupus antibody casues m/c and thrombosis. I understand that steroids or maybe apsprin or heparin are used to treat it, but am not really sure what the side effects of this are, and what the alternatives are either. In fact there seems to be a lot of info on Lupus, but not on Lupus anticoagulants!! I also was wondering if anyone else out there knew of other tests to confrim lupus anticoagulant ( other than BT) or if any one else out there had been diagnosed with this. Again Thanks for the help Ryn-frog

  4. #4

    Default

    Hi EJE, sorry for the mix-up; I know you've probably seen this already but thought I'd post it in case it was needed by anyone:

    Lupus anticoagulant
    From Wikipedia, the free encyclopedia

    Lupus anticoagulant is an autoimmune disorder caused by antibodies that bind to phospholipids and proteins associated with the cell membrane. This antibody has the peculiar nature of causing a delay in coagulation in laboratory tests (the partial thromboplastin time) while clinically predisposing for thrombosis. It is also known as lupus antibody, LA and lupus inhibitor. Together with anticardiolipin antibodies, LA causes the bulk of antiphospholipid syndrome.

    Although it is named "lupus anticoagulant," this is a misnomer. Most patients with the antibody do not have lupus erythematosus, and only a small proportion will proceed to develop this disease (which causes joint pains, skin problems and renal failure, amongst other complications). Furthermore, this antibody is not associated with anticoagulation, but rather is associated with thrombosis and habitual abortion (repeated miscarriage). Various other symptoms (e.g. migraine and rash) may be reported, but these are very non-specific, and it is uncertain whether these are caused by the antibodies at all.

    Diagnosis is initially with a laboratory test termed the dilute Russell viper venom time. Mixing studies then confirm the presence of lupus anticoagulant.

    There is no specific treatment, but miscarriages can be prevented with the administration of low molecular weight heparins (LMWHs), and thrombosis is treated with anticoagulants (LMWHs and warfarin).
    So it's not lupus, and it's nothing to do with coagulation... how dumb.

    Anyway, Heparins:
    Quote Originally Posted by British National Formulary
    Heparin
    Heparin initiates anticoagulation rapidly, but has a short duration of action. It is now oftern referred to as being standard or unfractioned heparin to distinguish it from the low molecular weight heparins, which have a longer duration of action. For patiends at high risk of bleeding, heparin is more suitable than LMW heparin because its effet can be terminated rapidly by stopping the infusion.

    Low Molecular Weight Heparins
    Bemiparin, certoparin, dalteparin, enoxaparin, reviparin, and tinzaparin are low molecular weight heparins. (No info on preventing miscarriage in this, so won’t type it all out.)

    Side-effects: haemorrhage, skin necrosis, thrombocytopenia, hyperkalaemia, hypersensitivity reactions (inclufing urticaria, angioedema, and anaphylaxis); osteoporosis after prolonged use (and rarely alopecia).
    Please note that these side-effects are not at all common - sadly the BNF book I have didn't give any figures, but I can't think of anyone who's had a problem with heparin, though saying that it's not a drug we use a lot in endocrinology. Please note that Warfarin is contra-indicated in pregnancy (over here, at least), so you really shouldn't be on that if you're TTC.

    Hope that was of a bit more help for you!

  5. #5

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    EJE, my doc has told me that I have Lupus antibodies but not Lupus... all part of my complex autoimmune issues apparently! I'm not sure if it's the same thing as what you have... my knowledge on it all is very limited. I'm ANA+ (SSA Ro & SSB La) and have thyroid issues as well. I was on 300mg of aspirin daily for my last PG.

    Don't know if that helps you any. Good luck with it all!

  6. #6
    Heather_23 Guest

    Default

    Yesterday my doctor told me I tested positive for lupus anticoagulant. I don't have much information just yet cause he's sending me to a specialist to see what to do about it. Um, he mentioned something about giving me shots (blood thinners?) I would really appreciate any information anyone can give to me. I'm totally freaking out.

    This year I got pregnant on the pill, I lost my daughter at 21 1/2 weeks pregnant. Then I got pregnant again and lost the baby about a month ago. Fortunately I have a very healthy five year old son, who I didn't have any problems with. I don't seem to have a problem getting pregnant (very thankful for that) but I seem to have a problem staying that way. Does anyone know what they will do to me, for me to have a healthy baby again?

  7. #7
    Ramandeep Guest

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    Hello ,
    I am surprised and feeling a bit relaxed to find a person having same problem as me. otherwise i could not trace a person to whom i can talk.
    i also have 4 year old boy and i concieved 2 times and have miscarriages in 16th and 20th week. now i am planning again to get pregnant with consultation with my doctor. one month prior he gave me asprin and some multivitamins.

    what precautions and care should i take so that i have normal pregnancy. Before my son i had a girl child prematurely delivered. she died within 24 hours.............

    so i was really worried about my health also but still want another child

  8. #8
    AmandaC Guest

    Default Lupus Anticoagulant

    Hello...

    My name is Amanda and I’m new to this site. I'm 23 years old and I’m not pregnant but i have been told that if i do want to carry a child that i need to think about it in the next few years.

    At the age of 18 i was diagnosed with a DVT in my left leg. I had been on a pill for 3 months to assist me with the pain i was enduring from my endometriosis. After 3 months i had a very bad pain in my leg but thought it was muscular. It ended up being a very deep clot. I then tested positive for a prothrombin gene mutation, lupus anticoagulant and antiphospholipid syndrome. I have been taking Warfarin to thin my blood since i was 18. I have been tested every 6 month for lupus anticoagulant and it has come back positive and stronger on every occasion.

    Looking to the future i have been told that i will not be able to take the warfarin whilst pregnant as it can harm the baby so i will have to inject myself twice a day with clexaine (heparin) for the duration pregnancy. I have also been told I will have an extremely high risk birth if i am able to carry to full term. This is alot of information to digest at 23 and although i'm not quite ready for children, i have always wanted them and will need to sacrifice alot to have them. I am lucky because i know my situation and i can seek expert medical care, others are not so lucky and only find out after they have miscarried that they may have lupus.

    I am interested in keeping in contact with any mothers that are going through a similar situation. I would like to hear your stories and any advice you may have for me.

    Thanks
    Amanda
    Last edited by AmandaC; March 18th, 2008 at 07:49 PM.

  9. #9

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    Default

    Hi Amanda

    I did not end up needing to take Warfin or Clexane, as it turns out my problem with recurrent MC was a chromosone one with DH, so we ended up having to do IVF with a process called PGD (pre Implantation Genetic Diagnosis)

    I do know though that Clexane and asprin has been sucessfully used to assist with preganacies

    Sorry I can't be of more assistance.

  10. #10

    Join Date
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    Default hi

    hi
    in 1999 i lost a little boy at nearly 8mths
    and was told i had primary anti-phospholipid antibody syndrome,
    ive since been pregnat twice & both times ive lost my little ones
    i was put on clexane both times,
    the symptoms ive had is my blood clots & my babys

  11. #11
    tiffany Guest

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    Hi, I had been diagnosed with lupus anticoagulent and antiphospholipid syndrome in November 07, after I had lost my third pregnancy at 17 weeks. However before any of these losses i managed to have 2 healthy boys. My doctor advised me of what medications to take if I wanted to have any more children. Clexane (heparin) and low dose aspirin. I am now 18 weeks pregnant and everything seems to be going well.
    I hope that this is any help

  12. #12
    rlyeesmommy04 Guest

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    i had 2 miscarriages in one year and after the second one i have been told that i have that after a blood test and i take 4mg of folic acid a day and was told if i get pregnant again that i would haft to take a shot everyday of my pregnancy and 6 weeks after the baby was born and i am so scared and want a nother baby so bad i am not a good person when it comes to needles. I am so scared of them I have a little boy that is 4 and never had any trouble with him and after him was when i had the 2 miscarriages. What did your doctor tell you?

  13. #13
    rlyeesmommy04 Guest

    Default

    ramandeep,

    hello i just found this site and people who have the same thing as i do and am very excited to know more people with this. I have a 4 year boy and afetr him i had 2 miscarriages in one year i was tested and they told me i have lupus anticoagulent, he put me on 4mg of Folic Acid and said that if i was to get pregant again that I would have to take a shot through my whole pregnancy and 6 weeks after the baby was born and I am so scared of needles and so scared, we want a baby so bad.

  14. #14
    renae Guest

    Wink

    Hi there everyone. I am new to this site and my heart goes out to you all. I am 38yrs, have a beautiful little girl who is 3yrs old. My husband and I desperately want more children and I have had 3 m/c's before finding out that I also have anti-coagulant lupus. My specialist put me on aspirin and 5mg folic acid which I take religiously, however I had another m/c in August. My specialist said she will put me on heparin when I fall pregnant again, am not sure of the dose or for how long. Although the sadness and loss of the other pregnancies are still with me and am really positive and upbeat that next time will be successful. Will keep posting and am glad to be able to share my experience with other women going through the same thing.

  15. #15

    Join Date
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    Default lupus anticoagulant

    I recently miscarried 1/21/09 and was told it was a blighted ovium. However, I was treated with lovenox for 1month for a superficial thrombosis I developed in dec. 08. I have not been officially diagnosed with lupus anticoagulant, however it does seem suspect especially with the SVT in Dec. How many have had a successful pregnancy after a miscarrage when using aspirin and low weight heprin. I'm still coming to grips with the fact that I have gotten preganant in the first place, then I lost the baby. It's comforting to know that others have the same issues and are willing to talk here. Thanks. I'm praying for everyone here.

  16. #16

    Default Been Through It

    My husband and I lost our first daughter at 31wks. Emily was stillborn with no warning and weeks without an explanation. She was over 3 lbs when she was born. About 6 weeks later my OB/GYN called me in for some bloodwork and we found I have Lupus Anticoagulant. I immediately saw a high risk OB/GYN and started an aspirin therapy. When I got pregnant again (about 9 months later) I started Lovenox at about 8 weeks. I now have two beautiful children. I was told the aspirin/blood thinner therapy was optional but I wasn't willing to risk it. The shots quickly worked into my routine and only posed a problem closer to delivery when I had to switch from the Lovenox (which is nonreversable to Herperin). We're currently debating another child so I've started taking baby aspirin again "just in case".

  17. #17

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    Last year around this time I was having extreme pain in my groin area. I thought maybe I had just pulled a muscle. As the pain got to the point where I couldn't even walk, my mom finally dragged me to the doctor. After a CT scan they found a large blood clot in my left iliac vein. To make a long story short, I was admitted to the hospital right away and spent the next month there. My entire left leg clotted and after several attempts to thin out my blood, they decided I needed to have the lytic procedure to manually break up the clots. After four of these surgeries, the clot finally cleared. During all of this, they found out that I have lupus anticoagulant. Nothing like this runs in my family at all and it has been a huge shock. I am 28 years old and have been married for 7 years now with no children. I am starting to want to have children and learned that with this blood disorder it is very difficult to stay pregnant. I have been on Warfarin since leaving the hospital and will probably have to be on it for the rest of my life. The doctors say that if I do decide to get pregnant that I will have to give myself Lovenox injections. I had to do this a couple of times while I was in the hospital for my clot and they are not fun especially since they are given in the stomach which is a very odd place for a shot. I have always been afraid to have children and now I am terrified. It's nice to know that there are other people out there who are going through the same emotions. I just pray that someday I can have children without any complications.

    Blessings to you all!

  18. #18

    Default

    Hello... I?d like to tell you my story.
    My DH and I have been trying to have a baby for 3 1/2 years now with no luck. 2 1/2 years ago we started the ivf journey with no success other than miscarriage after miscarriage after miscarriage (all prior to 7 weeks). Our FS just told us to pray and if it took 13 ivf's it would take 13 ivf's! One day I was speaking to a friend telling her what we'd been thru and she put me in contact with Dr Matthias in Sydney who is a reproductive immunologist. He ran heaps of test on me and discovered that I have antiphospholid antibodies and thyroid antibodies (I have hashimotos), and told me that the next ivf I would have to be on Prednisolone and clexane and most probably cardiprin. I?ve never battered an eye lid at these drugs as if that?s whats going to make me become a mum.... Well, I am now 9 weeks pregnant with twins and I?m ecstatic!!! We have never got this far and the babies are doing well. I feel like a walking chemist as the fertility clinic has me on a pregnancy maintenance program consisting of prog pessaries, pregnal and cardiprin and doctor Matthias has me on prednisolone and clexane ... oh and I?m on my thyroxine!!! I know we won?t be out of the woods until we're holding these babies. I have also been bleeding (bright red) a lot which freaks me out!!! They tell me I have 2 very little clots that are far away from our babies sacs and that the clexane is most probably encouraging the bleed. I?m with a high risk ob, and all my other specialists (incl him) don?t seem to think it?s a worry at all. They tell me that our little babies are completely unaware to whats happening around them....I get a scan and checked every 2 weeks which is very reassuring. don't get me wrong...we are still very nervous and scared and I?m sure the dr's wouldn't have but us on the drugs if they were going to harm me or our babies, but we do have the best of the best looking after us so the rest is with the big man above. I can't seem to take the smile off my face though. Should something happen to this pregnancy I believe it will just take us one step closer to being the mum and dad.

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