Succesful pregnancy with lupus anticoagulant

[Glassart]

Hi all of you...

I am so woried.

Iam 13 week pregnant after my daughter Joana was stilborn in January this year , the reason unknown. The doctors said if it was a blood clot or umbrical cord accident, the cord was only once around her neck.

When I was 6week pregnant i made blood tests and the results shown that i have positive results for lupus anticoagulant (max 42 sec i have 51) . In my 11 week the test was again positive but 43 sec and I am on aspirin 100mg and clexane 40 mg since my 8week.

I have no symptoms but i read for lupus anticoagulant and now 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 because everything was fine until 36 week when she stopped moving and the baby had stroke .

Is anybody has lupus anticoagulant positive and sucesful pregnancy?

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

I am frightend that i will never have children.

Do you think I should make and SLE test ?

lots of love

Sanja..

[beccafullcircle]

Hello Sanja,

I saw your post and felt I needed to sit down and say a prayer for you and your beloved baby. I understand from my own life the hardship, the pain that comes with loosing a child. During my twenties I had four miscarriages and an ectopic that burst that also nearly took my own life. Yet God has blessed me with two amazing biological sons and they are in their twenties now along with three more daughters one adopted from India and two that are my bonus daughters from my husbands biology. I hope your doctors are well understood with APLS and that they care for you completely. Two things that I have learned that I placed in my pregnancies is that I became nearly obsessed, ok thoroughly obsessed with my diet. I did not know that I had this disease yet all the signs were there. I was so happy to have my sons that I ate everything specific and drank a thorough amount of water and proper teas. I have never been a drinker or a smoker and kept my body intake organic for the most part. I walked most places but rested OFTEN. I believe that God kept my sons with me for great purpose for their lives, as I had no idea of the disease that lurked within me. A few days before my second son was recognized inside of me, the doctors had me prepared for exploratory surgery saying I had Endometreosis (sp?) Only to find me on the cleansing diet prior to surgery I went for a second opinion, Praise God, and they stopped my liquid diet and said I was with child. I delivered him successfully, both my sons were natural births. My youngest son came in one hour and I had some heavy bleeding and clots then that caused me to black out and go into shock directly after he arrived, yet I quickly recovered and went home promptly after his birth. I truly do not believe many doctors have the knowledge of this disease, many take it too lightly, as this has been my experience. It is so invisible yet the blood dominates so much of this complex vessel.

Anyway, I hope you appreciate my personal testimony as I saw your post and immediately felt you needed a hug and so I am doing this from the post. This forum has given me so much support, I have felt alone a lot carrying around the silence that comes with looking fine but hurting inside from the things that this disease sometimes presents. I am keeping you in my prayers, my faith has held me close in some of the most difficult times. I hope your doctors are caring for you well.

Take care, peace.

Becca

[MaryF Administrator]

Hi, to get the diagnosis is more than half the battle, who is managing your care? We have a great list of specialists on the charity webpage for Hughes Syndrome Foundation. Many women on here have been or are having similar circumstances to yourself, getting the right care plan in case will help greatly. Keep us posted as you go along, and I am sure others will say hello and recognize your story as being similar to their own. Good medical care will get you through. MaryF

[Glassart in reply to MaryF]

Hi Mary . Thank you for your support

I didn't mention that I am from Macedonia . I visit the doctor in the state hospital and also in one private hospital.

Can I write to some of your specialist on the page ?

Love Sanja

[MaryF Administrator in reply to Glassart]

Perhaps one of your doctors could write? London Bridge would be a good starting point. MaryF

[Hopingforababy]

I have lupus anticoagulant and had a still birth at 30 weeks and two miscarriages BUT after diagnosis I had a normal pregnancy and had my healthy little girl 7 weeks ago. She was born a good weight at 38 weeks. With the right treatment the chances are great!!!! X

[Glassart in reply to Hopingforababy]

Congratilations fof your baby ...

You gave me hope..

[noris10 in reply to Hopingforababy]

Hi. So where you on any treatments?

I had 3 miscarriages. Went to see an infertility specialist and diagnosis was positive for anticoagulant lupus.He put me on aspirin and folgard daily.

[Hopingforababy in reply to noris10]

Yes aspirin and heparin (Fragmin)

[starships]

Firstly sending you a big hug. I am so sorry for the loss of your daughter Joanna. It is so hard after loss to believe that you will be successful. After two miscarriages I was lucky to be diagnosed but only put on 75mg of aspirin and went on to have a missed miscarriage and another miscarriage before I was put on 150mg and fragmin which was the right recipe for me. My little girl was born 5 weeks ago and I was terrified throughout that I would lose her. The support and success stories on this site really helped when I was having a bad day. Xx

[Glassart in reply to starships]

Thank you **

[Glassart in reply to starships]

Do you take only 150 mg aspirin ?

I am on aspirin 100 mg and clexane 40mg.

When you had missed miscarriage ?

What helped you most in pregnancy ?

I am curently 13 week and too scared.

[starships in reply to Glassart]

I took 150mg of aspirin and 5000 units of fragmin which is the same as 40mg of clexane (my hospital doesn't stock celaxane). With the use of aspirin and heparin/clexane/fragmin you have a 70-80% chance of success compared to only 10% with no treatment. Aspirin works by making your platelets less sticky and clexane is the same shape as the lupus anticoagulant so prevents them from sticking the platelets together. That's why they are given together. I also made sure I drank lots and stayed well hydrated, reduced stress, looked after myself and rested.

[Glassart in reply to starships]

Thank you again...

[APSmum]

Hi Sanja, I am so sorry to hear about your loss. I am lupus anticoagulant positive and gave birth to my second healthy baby in February after being on 100mg aspirin and clexane throughout pregnancy. I also had many extra scans to check blood flow and babies growth and was induced around 38 weeks. Sending you big hugs and positive thoughts xo

[Glassart in reply to APSmum]

Thank you for your support.

What was the dossage of clexane and until what week did you take aspirin and clexane ?

Do you make LAC test during pregnancy ? The doctors said that I shoul make them every month. The first in 6 week was 53 sec (max 42 sec) and the one in 11 week was 43 sec. Was your test positive LAC during aspirin and clexane ?

I hope this baby will be in my arms healthy and alive.

I missed my first one very much.

[noris10 in reply to APSmum]

Did u take aspirin daily and for how long till before you got pregnant?

[APSmum]

You must miss her so. I really feel for you. The clexane/aspirin combination seems to work wonders for many on here so I hope you are soon holding your healthy baby in your arms.

Due to previous TIAs/ stroke my clexane dose was above the norm but I think most on this site are like you on 40mg clexane or equivalent. I took aspirin and clexane up until the day before induction again due to my stroke risk. I have previously tested triple positive for anticardiolipin, lupus anticoagulant & anti-b2gp1 so my LAC level was not checked during this pregnancy as far as I am aware.

[SSKhan]

Hi sanja, sorry to hear about your loss and the miscarriages. I have had 2 missed miscarriages, However I was denied any tests as per NHS guidelines it's not recurrent. However I was lucky as my GP undertook some tests and I came back with lupus anticoagulant positive. I was asked to repeat a test after 6 weeks however I felt pregnant again and the early pregnancy unit at royal free hospital in London promptly put me on baby aspirin and tinzaparin for my pregnancy. After 12 weeks I saw a haemotologist who monitored me and I was taken off in my 28 week only because of excessive nose bleeds and blood clots in my mouth. I had the same apprehension of not stopping the meds as they were miracle drugs for me in one way, I was monitored closely and now a mother to a four week old daughter

My haemotologist will now again test me outside pregnancy to see if I have any active or passive lupus anti coagulant...

Don't worry and take care...all the best.

Btw I see we can recommend consultants who deal with such cases-

I was looked after by-

Dr Khaled Zaedi- early pregnancy unit lead consultant- royal free Hampstead hospital

Ms Rezan Kadir- obstetric and gynae consultant- royal free

Dr Anja Drebes- haemophilia centre - royal free