new here pregnant with lupus positive results

Hi all of you...

I am so woried.

I finaly got my positive pregnancy test after my daughter Joana was stilborn in January this year at 36 week , the reason unknown. The doctors said if it wa=s a blood clot or umbrical cord accident, the cord was only once around her neck.

Now I am 8 weeks and i made same blood tests and the results shown that i have positive results for lupus anticoagulant (max 42 sec i have 51) .

I have no symptoms but i read for lupus and know i am too frightend because i might lose this child too.

The doctors are stll not sure that this was the reason because Joana;s heart stoped.

2 of my doctors said that i should take aspirin 100mg and i started from yesterday .

Does aspirin have side effects?

One of my doctors said i dont have to take aspirin first 12 weeks. (I visit 3 doctors this time .)

Is anybody has lupus anticoagulant positive ?

Please give me your advice , i dont want to lose this child ....

I am frightend that i will never have children.

lots of love

Sanja...

9 Replies

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  • Hi there I don't no much on pregnancy and lupus but it seems you mentioned you have lupus anticoagulant which is antiphospholipid syndrome the blood tends to clot often in this instance we take aspirin some take heparin and some warfarin theye have said before there was a risk in pregnancy however modern science and medication has completely thrown this out the window it's proved that with any three of the above listed medications you can go on to have a healthy baby however this doesn't mean that you might have a c section or a natural this cannot be determined until the late stages of pregnancy however If I was you I would look for a good doctor who knows about lupus and use this doctor throughout the pregnancy this way he will get to know you and have his own options rather than having multiple doctors and them throwing there solutions it's best if you have someone who specialises in lupus and pregnancy for this where are you based if your in London there is a lupus centre with pregnancy combined???

  • Hay there last year I had a miscarrage just befor I was dignosed with lupus a year last I'm preg again this time it's all going well , docs have said I have antiphospholipid syndrome and blood clots easyly I'm on asprin and also from 6 weeks pregnent they started me on heparin whith I inject in the stomak everyday without a fail, docs also said not to miss an injection could be fatel for the baby , my advice go see a good doctor or a specialist , I'm currently at leeds st James and delivering at LGI X ALL THE BEST

  • Hi Mainshah

    how are things ?

    How is your baby ?

    Thank you for your replay

    Iam curently 13 week and on aspirin 100 mg and clexane 40 mg.

    The baby is fine but I am scared I all the time I think I have missed miscarage and that the baby heart stopped..

    Love Sanja

  • Hi Glassart,

    I am so sorry to read about what you have been through, I do hope this site and the community will be of help to you by providing you with positive advice and support.

    If you think it would help i can send you a general information pack regarding lupus and also include a few extra pieces of information regarding pregnancy and lupus anticoagulant - more commonly know as Hughes Syndrome. (I've included the link to the Hughes Syndrome Foundation website for you below.) Just let me know your address by sending me either a private message or an email and i will pop it all in the post for you. hayley@lupusuk.org.uk

    Obviously, please feel free to use this site as much as you need, but if you would like somebody to talk to you can call us here at the National Office on 01708 731 251. We also have people from all over the UK who are available to talk to, if you would like to be put in touch with one of these contacts then just let me know in your message and i can provide you with their details.

    If there is anything else i can do for you please do let me know.

    hughes-syndrome.org/

    Best wishes,

    Hayley

    LUPUS UK

  • Thank you Hayley ...

  • Hello Sanja, I too have the same - I have had 3 births: the first Georgina arrived at 32 weeks and weighed 2lb 3oz, Richard at 27 weeks and weighed 1lb 15oz, I then gave birth to Isabella at 24 weeks weighing 1lb, she struggled for life for a month but unfortunately lost the fight. I was diagnosed with SLS after Isabella, Please please insist that you are monitored closely!! Insist that you meet with a lupus or Rhuematologist. Please do take the 1/2 asprin as it will definitely help! However, you should be having heparin injections when you are further gone and you should receive steroid shots to help with the baby growth. Please ask to be referred to a consultant at the hospital. I have had suffered several miscarriages and probably more without realising but I am the proud biological mother of 2 Georgina who is now 15 and with no complications of the prematurity and in fact in talented and gifted at school who wants to be a scientist, and RIchard who is 14 and is also very healthy despite a very bad start with over 2 months in hospital (another story).

  • Thank you for you replay

    You gave me hope ..

  • Hay there sorry to hear what ur going through, I'm nw 23 weeks went for a scan at 20 weeks and they said my plercenter has matured? I'm on steroids hepirin injections ad asprin , as a parent we do get worryed , I'm Sceard of going in to labour earlyer? Denisep is it possible that I will go into early labour ? First pregnency don't nw what to expect and also did have a miscarrage befor this.

  • Hello,

    My heart goes out to you for your loss earlier this year and to all the other ladies who have replied.

    I have no experience with pregnancy but, for what it's worth, I do take aspirin every day due to something called Essential Thrombocythaemia ( too many platelets). Honestly, I don't even notice the tablet. The only thing I do notice is when I get blood taken, it takes a little longer for it to stop bleeding but this is an improvement on not being able to draw blood at all!

    I hope everything goes well for you with this pregnancy and that you are well looked after during it.

    Sharon

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