Obstetric APS - anyone?: Hi everyone, I... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Obstetric APS - anyone?

wlnz profile image
wlnz
11 Replies

Hi everyone,

I have recently been diagnosed with APS after recurrent miscarriages.

Would love to hear from anyone with similar experience and what they have gone through or are going through to achieve healthy pregnancy etc ...

Thank you for having me in this group!

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wlnz profile image
wlnz
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11 Replies
MaryF profile image
MaryFAdministrator

Hi, sorry to hear about your miscarriages, and thank goodness you have had a diagnosis now. Firstly it is important to have the right specialist. On the right hand side of this forum under pinned posts, is our list of recommended specialists, area by area across the UK. You will find a lot of support on here, as many have joined with a similar situation/history to your own. MaryF

HollyHeski profile image
HollyHeskiAdministrator

Hi welcome, so sorry for youre losses. Great youve been diagnosed and youve found this forum.

Lots on here, in exactly your position and I'm sure will be in touch soon. xx

INCR profile image
INCR

Hello! I’m sorry you had to go through that. I had two losses before being diagnosed with APS. I am now almost 34 weeks pregnant and I have been doing Lovenox and aspirin since I found out I was pregnant. So far so good! Your doctor will recommend the best treatment to you, but since you already have been diagnosed, I’d say that things can only go well from now on! Good luck :)

Esolt profile image
Esolt

I think many of us have had similar losses. You are not alone here. There are treatments and here in Virginia, they recommend heparin. I did not try it, as by the time I lost my fourth baby, I could not bear the possibility of going through another loss again. Also, there are risks for both you and the baby. You have to decide what you will try, and I wish you the best of luck!

Sara_A profile image
Sara_A

It’s great u have been diagnosed so that u can get the right treatment and hopefully have a higher chance of success. With treatment u have a huge chance.

I have aps and sle and have had 2 successful pregnancies using aspirin for 1st then aspirin and fragmin daily for 2 nd.

I really wish u all the best for a successful pregnancy x

wlnz profile image
wlnz

Thank you all for your replies!

I am currently going through the fourth miscarriage :( despite aspirin and daily lovenox 40mg.

Has anyone found higher dose of lovenox helpful?

Has anyone been put on Hydroxychloroquine?

XX

JuliesaidFutz profile image
JuliesaidFutz in reply to wlnz

I am so so sorry for your losses. I too know the grief and heartbreak of multiple miscarriages. No one should have to go through that. I wanted to respond too because I have had two successful, full term pregnancies. I took Lovenox 40 mg twice daily instead of once, plus a baby aspirin. I also have two other genetic markers that affect clotting, MTHFR and PAI-1. I agree with others-a specialist that is very experienced with APS is critical.

wlnz profile image
wlnz in reply to JuliesaidFutz

Thanks JuliesaidFutz!

So glad to hear of your success stories.

Can I ask what MTHFR defect you have?

I am MTHFR heterozygous and been told it’s very common and unlikely to be linked with miscarriage.

HollyHeski profile image
HollyHeskiAdministrator

Ive copied this from a research paper - 'Anti-malarial drugs (hydroxychloroquine, chloroquine) are considered pregnancy category C drugs. While there is evidence of risk for damage to the eye and ear, if the benefits of these drugs in controlling RA symptoms are judged to outweigh the risks, they may continue to be used during pregnancy.'

Down to Doctor and patient, to decide and go through.

Will be interested to see if winz's question if anyone has tried it and to wether its helped.

Chanel1323 profile image
Chanel1323

Hi there... First of all I'm very sorry for your losses... Devastating, as many of us know. I lived in UK until last November, but didn't had time to reach any consultant related to APS. I have some friends with obstetrical APS and they were told that if heparin at prophylactic dose and aspirin don't work, next pregnancy will be anticoagulant doses for heparin. In Spain ( in Spain many UK procedures are followed and obstetrical APS is one of them) the standard procedure following with anticoagulant doses if prophylactic doses don't lead to a successful pregnancy. And if all of this fails, immunoglobulins are added to the cocktail. At my GP appointment I knew a woman who took Prednisone and Azathioprine... She was 37 weeks, so far, so good; Azathioprine is a no-no in pregnancy for many docs and obgyns too, but in her case made the difference.

I'm going to suggest you to look your thyroid function as well... Low thyroid function is linked to miscarriages and sometimes docs miss it... Don't know much about hydroxychloroquine, but think that aspirin is a Class D in pregnancy and we can't be moms without it (I got severe preeclampsia/ HELLP in my first pregnancy. Clexane and aspirin led me to have my daughter).

The key to success is to find the best consultant you can and fight for everything you think can improve your pregnancy results. The advice given here is just as excellent as usual. Just take your time to grieve, learn the facts, and when you are ready, start fighting...

Wish you the best luck,

Chanel123

wlnz profile image
wlnz in reply to Chanel1323

Thanks Chanel123!

My thyroid function has been checked and it has been fine. But will get it checked again. Thanks for reminder. :)

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