Sticky Blood-Hughes Syndrome Support
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Lupus Anticoagulant Pregnancy

Hello, i am new to this group and I have just been diagnosed with lupus anticoagulant after having three miscarriages. I am currently five weeks pregnant and am injecting with clexane and taking aspirin. I am confused by my diagnosis, my infertility specialist is away untill next week so I have not had a proper explination on the seriousness of my condition. How manageable is lupus anticoagulant and what are the risks, how did I get it, I know mostly my doctor can answer these question but I am just looking for support. As well as information from anyone who has been pregnant with this condition, I can't seem to find many women that have it while pregnant but I am hoping that the medicine will let me keep my pregnancy.

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Hello Nallita welcome to our forum. Congratulations and please try to relax and not stress too much as it will not help you and the baby.

First of all "Lupus Coagulant" is NOT the name of the condition but the name of one of the antibodies that you may have tested positive for. Hughes Syndrome/Antiphospholipid Syndrome/Sticky Blood is the name of the condition which is an autoimmune condition that causes the blood to become too sticky and therefore have a tendency to clot. When pregnant it can cause recurrent miscarrages which you have unfortunately experienced.

There are 3 antibodies that you can be tested for: aCL -anticardiolipin, LA - Lupus anticoagulant and antiB2GP1- anti-beta2 glycoprotein1.

Many ladies find after they have had three miscarriages that they are tested and test positive to the disease. There is some school of thought that you can have a version of APS only when you are pregnant, however that has not yet been proven. The general prognosis is that once diagnosed it is for life even if you are not symptomatic. You may only have to take aspirin but you should be aware that antibodies come and go and just because antibodies turn negative it does not mean the disease has gone.

On the positive side, successful pregnancy rates are now in the 90% range so you have a very high % chance of having a perfect pregnancy. You should be well monitored and its important that you are under a specialist who is familiar with the disease and treating it during pregnancy. It sounds like you are on the right track at the moment.

What causes it....no one knows at the moment. We think there is a genetic predisposition and then you will have had some sort of trigger, which in many cases is pregnancy. Your heparin should continue until before the birth and then normally resumed after for 6 weeks.

We have many members who have had successful pregnancies and or now pregnant. Im sure some will be along soon to give you support.

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Thankyou I have mostly focused on staying calm and relaxing but sometimes I can't help but freak out a bit. I appreciate the clarification, the blood draw I had for this test was done before I conceived so I'm not sure how pregnancy has effected my condition. I also did not know LA antibody was classified as hughes syndrome. I am being seen through NHS healthcare in the UK and I worry if they will follow up with the proper care I need it was a battle just receiving my clexane medication from the GP even after my infertility specialist told them I needed it right away to prevent a miscarriage. Now I am just waiting for them to continue checking my hcg levels untill they refer me to a specialist and the antenatal/ pregnancy unit. But the pregnancy unit made it clear they don't want to see me if I am just having another miscarriage so they are waiting for my hormone levels to show a steady increase. I am just not understanding the severity of this, is the same with or without pregnancy? How long will i have to take clexane after the pregnancy, and many other questions. I will just need to have another chat with the Dr that diagnosed me next week to really understand the treatment plan. The GP had also mentioned I would eventually be seeing a blood specialist to track my condition, I dislike waiting on NHS they take forever and I always feel like I have to fight for my treatment/care.

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Welcome Nallita to the group 😘 and congratulations on your pregnancy.

It really is a daunting and confusing time for you right now and we have all been there unfortunately. Try to not worry too much and keep well.

This forum is great for any questions or concerns you have.

Lots of Love to you

Bridget xx

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Thankyou Bridget, I am already relieved to have found this group and have some support.

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Hi and welcome.

Congratulations on your pregnancy, good news that you have a diagnosis and that you are on the right treatment.

Its all very confusing and frightening at first, we learn about this as we go on. You will find many on here who have gone through successfully what you are going through.

Let us know where in the UK you are, so others can suggest preferences to a specialist.

Stay with us so we can support you through your pregnancy. xx

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Thankyou for the warm welcome, I am American but currently reside in Lincoln, Lincolnshire in the Birchwood community.

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Hi Nallita

I live near Lincoln and see.

Dr Myers at Lincoln County Hospital she is a haematologist and is one of the specialist listed on the aps site you can access the list under topics on the right hand of this message page . She is very good and I would recommend her.

. I hope all goes well for you

Best wishes

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Thankyou,

I am confused why I have not been referred to a haematologist. It seems everything is on hold untill my HCG results come in but I would think I need to be referred regardless of my hcg results so I will ask the GP next time I see them.

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Hi. I have lupus anticoagulant and it cause me to have a late miscarriage in 2015 at 5 months but once diagnosed. I had aspirin low dose and clexane 40mg daily in my next pregnancy and had a full term baby at 38 weeks. He is now 18 months and into everything! The consultant should keep a very close eye on you as they did with me. Good luck!

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I am glad you now have a happy healthy little one. All of my three miscarriages where before week 10 so I am anxiously waiting for my hcg results so I know the pregnancy is developing well thus far.

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I also have an 18 month old boy, I look at him and think if my body did it once it can do it again so I'm hopeful the medicine I am taking will allow us to have another happy baby.

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Hi Nallita you have started to get some good responses. Just to clarify my post and your query. Triggers can be anything, stressors to the body of some kind. So infection, mental or physical stress, environmental etc. Its difficult to tell when exactly you acquired the antibodies because unless you are tested you would not know. Its a shame they didn't test you after your first miscarriage and this is something we feel should be automatic and actually a routine part of pregnancy screening.

Normally the clexane treatment is only during pregnancy and for a few weeks post delivery. Then you will have to be assessed to decide if you need to continue with any treatment. If no clotting incident has occurred then many people opt to take a baby aspirin daily. I would not worry about that at the moment and just concentrate on enjoying this time and taking each day as it comes and the new experiences pregnancy brings.

GP's can need a little education on this condition!

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My first pregnancy was my son who is now 18 months and healthy. I believe this is why they did not test be for it sooner, because I have already had a successful pregnancy and my only complication with him was gestational diabetes.

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Hi , I'm sorry to hear of your losses and congrats on your new pregnancy. I had 2 healthy babies and then with my third I had a full term stillbirth which was devastating. I tested positive for lupus anticoagulant. With my fourth pregnancy I took daily aspirin and clexane. He is a healthy 8 month old now.

Good luck

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Those of us with autoimmune conditions, like APS, have defective autoimmune “computers.” Our computers do a good job of identifying germs and viruses that attack our own cells, and then construct an antibody army. But, autoimmune computers often get these little glitches where they mistake a normal part of our own body as an enemy which must be attacked. In our case — it’s a cell found on the lining of platelets and/or capillaries. Platelet attacks result in clots such as DVTs and PEs. Ischemic strokes result from capillary clots

Our autoimmune computer’s “mistake” is the trigger. For many, the trigger is the hormonal changes associated with prenancy. Or it can be a virus, un unidentified food allergy.

And its called “lupus anticoagulant” because early research into our condition found that a positive LA test was associated with miscarriages and vascular conditions. But just because you have a posiitive LA does not mean you have lupus.

The biochemistry is quite complicaterd. Now that we have computers and more advanced biochemistry methods scientists are finding that our hormones are very interconnected and complex. But meanwhile — it is helpful to know that the autoimmune system often uses a “scatttershot” approach: if an enemy is detected, such as a virus or bacteria, our autoimmune computer will sart cranking out more antibodies to some/? Most? All ? Of the identified enemies in its computer. Which means that symptoms of APS can come and go.

The good news is that we have enough knowledge to recognize and treat this autoimmune mistake. Eventually we will be able to figure out how to identiify and fix that original computer mistake. We’re getting closer.

Action can often calm nerves. You might try avoiding gluten as there is a strong relationship between unidentified gluten sensitivity and autoimmunity. Stress is the big autoimmune trigger, so you might look into “deep breathing” as a stress reducer. Look for Kay Thacker’s book “Sticky Blood Explained” or one of Dr. Hughes’ books. And try to relax. Many of us on this site have lived with this disease for decades. And we live normal lives after mastering a few lifestyle “tweaks.”

So ask away on this forum. We’re all here to share the “tweaks” that work for us, and to support each other.

(Are you a Star Trek fan? If so you’ll understand:) “KerPlach!”

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