Pregnancy- Antiphospholipid antibody ... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Pregnancy- Antiphospholipid antibody disorder

lulu83 profile image

Hello, i was diagnosed with APLS in 2003- i was 5 months pregnant. I lost my baby due to a blood clot in my placenta, i also had a blood clot in my liver.

3 years ago we started trying to get pregnant, been on lovenox since we started trying- 1 1/2yr into trying we got pregnant but at 9 weeks i had a miscarriage. 11/2015- this is now my 2nd miscarriage. We are still trying, but still no positive. Im just wondering anyone with this disoder--- have you had a baby? is there hope for us?

Thank you

16 Replies


I'm so sorry for your losses. Please don't give up hope there are lots of us who have gone on to have healthy babies after such heartbreak.

I had 3 consecutive miscarriages before 10 weeks and was told I was unlucky and was never tested for anything.

I then had a beautiful baby girl born at 29 weeks due to placental failure and severe growth restriction. She lived for 6 weeks and 2 days until gaining her angel wings due to an infection. Again I was told I was unlucky.

I then was put on aspirin only and delivered a healthy but small daughter followed by a healthy son two years later.

My finally pregnancy ended at 33 weeks due to a concealed placental abruption and by a miracle we both survived.

I was diagnosed as having APS 7 years later after many symptoms and several TIAs.

So although I had terrible tragedy and heartbreak I managed to have 3 healthy children before I even knew I had APS. The fact that you know is a good thing and the Drs can keep an eye on you.

Good luck and don't give up hope.

Kelly x

lulu83 profile image
lulu83 in reply to Yllek

Hello Kelly! Thank you soo sooo very much for sharing this with me. Yes this is heartbreak to hear, to know we go through this, but its reality. Im so happy to hear that you have 3 beautiful babies!!!! I don't want to lose hope, i promise i don't but sometimes i just dont know anymore. Honestly though, i read what you went through and many other women.... i promise not to lose hope, i will keep trying. 3 years when i was put on the Lovenox we were so hopeful, we thought: Ok we now know what i have, and im on lovenox so for sure everything will be ok, it has to be ok, we will meet our baby. And of course... that wasnt the case.

Still want to try, im still injecting myself. They said once i get a positive i will again add a baby aspirin.

Im scared. Unsure of how many more heartbreak we can handle.

thank you thank you so much

Yllek profile image
Yllek in reply to lulu83

I know exactly how you feel and spent many years where you are now. Hoping for the best but fearing I would never become a mummy.

Keep fighting and don't be to hard on yourself when the dark days take over because there's always brighter ones ahead x

lulu83 profile image
lulu83 in reply to Yllek

Ohhh kelly,

just reading your message, your words- i want to cry. im an emotional person when it comes to this and im sure you understand me. thats exactly my fear, to not be a mom. i want a lil human of my own- i always think of my daughter i loss in 2003, and i always think of my lil heart that i lost last year---- brings tears. I will keep fighting.

Im so happy i found this support group. i always want to vent, to let it out. its hard.

thank you!!!!

I am so sorry for your losses it is heartbreaking.

I had two miscarriages at 7-8 weeks before being diagnosed with APS and put on 75mg aspirin. This treatment got me a little further but I lost my third pregnancy at 14 weeks. The NHSwould not do any more for me and after my fourth loss I knew I needed something more so paid to see a specialist. He did some tests and prescribed 150mg aspirin along with Heparin and I had my full term health little girl in 2014 whom I never thought I would have.

I hope this gives you strength to carry on.

Go back to your dr and ask for a TEG test to see if you need any more anti coagulation meds.


Apspain profile image
Apspain in reply to starships

Plaquenil to get the disease activity done minimum 6weeks to start working. Alongside baby aspirin 75mg and folic acid 5mg

Than start trying after 2mths on conception 60mg clexane daily throughout pregnancy.

Apspain profile image
Apspain in reply to Apspain

I lost everytime till I was given the above instructions..once on that delivered healthy baby boy!! Best wishes. Good Luck xx

lulu83 profile image
lulu83 in reply to Apspain


Thank you so much for sharing, i truly appreciate you- so happy to hear you have a healthy little boy!!!!!

Clexane must be the same as lovenox/ enoxaparin i think. the one im on is Enoxaparin 40mg 1 inj in the AM, and 1 inj in the PM. They had me on Aspirin 81 mg.

thank youuuuuuu!!!!

Apspain profile image
Apspain in reply to lulu83

Your welcome...I have 8 little angels , so I can definately empathise with you ladies ...I hope from that you will know never give up hope and with the right combinations you will hold your precious bundle. I dont know whether it helps in anyway but i also wore a miraculous gave me strength. Xx

lulu83 profile image
lulu83 in reply to starships


Awww a little girl, im so happy for youuuu!!! -Yes you and others are giving me hope, i promise i don't want to lose hope, i will try not to.

Ok so my last pregnancy last year i was on lovenox- 2 injections a day, and they also added on baby aspirin- 81 mg- 1 a day.

Is TEG something i would ask once i become pregnant?

Thank you so much for sharing, i hope you understand and know this means so much to me.

starships profile image
starships in reply to lulu83

My little girl is such a joy, I am truly lucky. I had the TEG test before pregnancy so you can start the correct treatment once you get a positive pregnancy test. My fragmin was twice daily 5000 units, aspirin once a day 150mg and I also had progesterone pesseries and 5mg folic acid daily. It's the recipe that worked for me and I truly hope you find your magic recipe for success xxx


I'm so sorry for what u have been through.

I have aps diagnosed a few yrs ago so already diagnosed before having my children. For my first pregnancy I was just on my usual daily aspirin 75mgs and had close monitoring regular scans and scans of placenta to check blood flow. Baby was 5lb 12 brought on at 38wks. Then for my 2nd pregnancy I was also put on daily heparin inj along with the aspirin as obs thought it might make baby a bit bigger, induced at 38 wks baby was 6 lb 1oz, had regular scans etc again.

My rheum and obs communicated to each other and I was very closely monitored I also had positive anti ro antibody picked up for my 2nd pregnancy but they monitored for this too and baby was ok no heart block. So maybe with good communication between Drs and a good obs ( I don't think a single midwife thru either of my pregnancies had ever heard of aps??!) which I found a bit odd due to its relation to miscarriage? So I was lucky to have an obs consultant that understood its management. I did however ensure I saw consultant every time as I once saw the registrar who brushed it all off and was going to stop my aspirin and heparin! I refused to see him again. U can't take any chances and if u are not happy u must say. I'm in the medical profession so I'm not slating them this is just my personal experience.

Sorry for going on!! X

lulu83 profile image
lulu83 in reply to Sara_A

hello Sara!!!

im so glad you refused the advise from the dr, to stop aspirin and heparin, i cant believe they would advise that! So scary.

Why are you seeing a Rheum??

before i got pregnant this last time, my hematologist started me on Enaxaparin 40mg 1 inj in AM, 1 inj in PM. She then said once you become pregnant you start 81 mg of aspirin. she then said see an OB.

I seen my OB, she agreed w hematologist and she referred me to Perinatologist.

I then followed up with Perinatologist throughout those 2 months and she had agreed with hematologist.

Im so happy to hear you have 2 lil ones! thank you for sharinggggg!!!!

Sara_A profile image
Sara_A in reply to lulu83


Yes the registrar said this even tho the consultant had already made this plan! It's lucky I know stuff about it otherwise I could have done what he said and who knows what would have happened!

I see a rheumatologist because I have lupus and aps have been unwell since age 21 with joint pain am now 37.

Yes I'm so lucky to have had 2 gorgeous babies all ok! Could have been so different.

Ive had 3 misscarriages in last year all due to aps i am told im able to have a healthy pregnancy now im medicated yes ive had children previously im having trouble in trying since last mc in early may i dont seem to fall pregnant easily anymore .... following post x

Ive had 3 misscarriages in last year all due to aps i am told im able to have a healthy pregnancy now im medicated yes ive had children previously im having trouble in trying since last mc in early may i dont seem to fall pregnant easily anymore .... following post x

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