Lupus Anticoagulant & pregnancy

I have had 5 miscarriages over about a 6 year time frame, I was diagnosed with lupus anticisgulant following the third loss (after many tests). I live in a regional area, so access to specialists is very limited. I have also been told I have anticardiolipin antibodies, beta 2 glycoproteins & antiphospholipid antibodies (same as lupus anticoagulant?)

In pregnancy I have been treated with clexane & low dose aspirin daily, but have not had a successful pregnancy so far. Best effort was 12 weeks, where we had no heartbeat at first trimester screen 😐.

Any tips, positive stories, medical feedback etc. would be super helpful.

Thankyou

5 Replies

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  • Hi and welcome, I am so sorry to hear about your losses, lots on here have suffered similar and will understand what you are going through. It is important to have a specialist who fully understands Hughes Syndrome/APS, and also looks at your levels of B12, D, Iron and Thyroid function alongside the other testing done. Where are you located? This will help other members to say hello and where they have had successful care. MaryF

  • Yes I too would like to add my sympathies for your losses, its such a difficult time and you are so brave to keep trying. You should know that many of our members have had the same experiences and have gone on to have a successful pregnancy. It is really imperative that you are under a centre which deals with recurrent miscarriages and if possible has a Antiphospholipid syndrome specialist. I note you say you are living in a regional area however that will not stop you from being referred to a centre that can deal with this issue. It may be inconvenient to have to travel further a field but the knowledge that you will get which can possibly be sent back to your regional centre can make all the difference.

    You will need to do your research, find out where the best place or Dr is. We can help with this if you would like us too. Then you will need to go to your GP and insist on an urgent referral there.

    Don't give up just get wise and knowledgable. Its unfortunately what we have all had to do to get the very best care. Please keep in touch and tell us how you are doing.

  • I'm also so sorry for your losses. I've had three miscarriages and it is such a hard thing to go through. Have your doctors recommended changing the medication strengths at all? I know from browsing this forum that sometimes people are given stronger aspirin and clexane. There is something called a TEG test I think that can be done to see how much your blood clots.

    I would agree that a referral to a specialist on the list from this site would be the best way forward. I'm also in a very rural area (we have no obstetric consultants here) and have asked to be referred to a specific specialist in the city 100 miles away.

    I hope it all works out for you and you manage to get further help.

  • I'm so sorry. I've also had 5 miscarriages but have had one live birth and am currently 35 weeks pregnant- both on anticoagulants. In addition to maybe upping your dose of clexane, ask about starting anticoagulants at ovulation rather than when you get a positive pregnancy test. This helped for me. Hang in there.

  • What an awful situation to be in, my heart really goes out to you.

    I think you have had some really good advice. Definitely speak to drs about upping the clexane, or introducing the clexane at ovulation, or maybe a low dose before pregnancy is confirmed and then increased once confirmed. I think you should be taking the aspirin all the time, regardless of time in your cycle. To give you the best chances.

    Seems to me the problem is at implantation, have drs acknowledged this or not really? Might be worth looking up the effects of aps on implantation, as a discussion point with your dr.

    Are your periods etc regular? Do you have a 14 day luteal phase? I found that aps effected my fertility and acupuncture help restore it. Acupuncture is very good at regulating your hormones and improving short luteal phase, which is key to a good implantation. Acupuncture is also very good for improving circulation - which is a plus.

    I really hope you find something that works for you, whatever that maybe. Hope you get that rainbow baby soon xxx

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