APS (antiphospolipid syndrome) discovered halfway in pregnancy

[ParanoidAndroid39]

Hi,

So my imunnologist discovered I have APS when I was 18 weeks pregnant. They've put me immediately on aspirin and blood thinners (clexane 0.4). I have one miscarriage at 7 weeks and one biochemical, and this is my first pregnancy this "long". Reading about APS, I've seen that it can be a cause of stillbirth/late pregnancy loss - mostly due to the placental insuffiency. I'm scared that I've been put on medication too late in, and that this will happen to me.
Was anybody in a similar situation? Most of the posts I read are when women started blood thinners early in their pregnancy.
Does anybody maybe know can I check that my placenta is working fine in any way, or not? I've done the fetal heart US and they checked the "placenta flow" - it was ok. Is that a good enough "test"?

Hi I have aps, I can’t answer your question because I was on thinners from day 1 but there is a fab Facebook support group I would join for aps ladies and I’m sure there will be someone who will be able to answer your question. There are a lot of American ladies in it and the advice in America seems to be a bit different to the uk but I’ve found it a fab source of info.

@NorthernDuck thanks for that info. Do you know the name of the group, or it's easy to find on FB?
Your pregnancy was/is going well? Can I ask, did they do any tests while you were pregnant to check if the dosage and the drugs were okay (to change them if neccesary)?

As a general thing op, how often are you here ng scanned? They can monitor the placental health as often as they scan you and can look at bringing baby earlier if necessary. Good luck

@SleepingStandingUp I'm scanned every 4 weeks, but I've read that small blood clots aren't seen on scans. I'm having my next appt/scan tommorow, so I'll ask my MFM about it. But I'm kinda being scared nonetheless. The fetal heart scan is coming up in two months - and it will be the second (and probably the last) such scan I'll be doing. If they can check for blood clots related to APS or that can cause placental insufficiency via a "normal" scan, that would be a relief to know. That way I'll atleast know that things are okay so far. Which would probably mean that they weren't too late with blood thinners

@ParanoidAndroid39 I’m probably a bit different to you, my husband also has a clotting disorder so there were 2 clotting issues (the haematologist was very excited) mine affected me and my husbands the baby. It was an ivf pregnancy so we were on meds from day one. I was taking aspirin and heparin. The pregnancy I took the meds for was successful after between 10-15 miscarriages (we weren’t really counting and I hadn’t appreciated I was having miscarriages until I spoke to the haemotologist as I was waiting a week past my period to test and it was usually negative by then).
The doctor didn’t check dosages, it is all about the blood flow through the cord and they will check this a lot with scans. The medication is fairly standard and I know it’s tough, but it either works or it doesn’t, I don’t think there is much they can do apart from monitor you and hope for the best/deliver early if the placenta looks like it is failing. The vast majority of ladies once on the meds will go onto have a successful birth. If you’ve made it as far as you have and are now on the correct medication you’ve got a really good chance. I think the chance of stillbirth with APS once you get past 20 weeks and are on drugs is about 5% so only twice the average of a normal pregnancy. Have you seen a haemotologist or just an obstetrician?

The Facebook group is called anti phospholipid/ APS/ pregnancy / miscarriage.
The way it was explained to me is that they look at how effective the sieve is, so if the flow isn’t good they know there is clots. Not sure whether this helps?
they will scan you a lot to monitor and bring the baby early if needs to.
I got to 38 weeks.

@NorthernDuck thank you so much for the useful information and reassurance. You've given me rather good news and I feel somewhat relieved :) APS was found by my immunologist, and I'm just now (at 25 wks) being referred to a haematologist, but mostly due to anemia. The pregnancy was also IVF, and I've been seeing my immunologist for a year prior to this (finally) successful cycle, because I have one autoimmune illness (celiac), and I'm borderline for lupus - no symptoms yet but it seems that I have a greater chance of developing it later. I got in touch with my immunologist when I've gotten pregnant, they did tests, and my anticardiolipine antibodies came back high. They were intermediate before pregnancy. It took two months to get the tests back so thats why I was put on heparin and aspirin that late in. Now I'm being monitored by my immunologist and OB, and am waiting for the results of "new" immune blood tests. It's really, really good to know that checking cord blood flow/sieve can "show"if the placenta is "doing fine". I've done a scan like that at 22 weeks, when they specially checked the baby's heart (my husband has congenital heart issues - thankfully the baby's looks fine). I'll ask tommorow at my scan if my OB can also check for blood flow, or if I should go and do the "special" scan somewhere else more often. So, it seems so far that the medication is working. I'm hoping that this will continue. I'm all for being induced earlier if that will lower the risk of things going bad.

@ParanoidAndroid39 Im glad I reassured you, I’d really recommend the Facebook group though it’s lovely to see the success stories in it and also see other people’s concerns and suggestions. I think they check the flow regularly. I had a panic after one scan because mine had dropped from 50ish% to 30% but the haemotologist explained they wanted a lower percentage not a higher one on that particular test. They are great at explaining things and see it all the time even though it’s quite rare if they are a consultant haemotologist obstetrician (I think there are only about 15 nationwide at the main hospitals. That’s why I asked if you had seen a haematologist, I was admitted to a smaller regional hospital near my parents with a haemorrhage and the obstetrician there hadn’t really come across anyone with APS and didn’t really know what to do but my consultant said he sees 4-5 ladies a week with it because he only deals with haematology in pregnancy and the difference was massive!

@NorthernDuck I've found the group and sent a request to join :) I'll see what will the haematologist say - I'm going for anemia but I will def bring up APS up. I did see one privately - and got reffered for more tests for "standard" thrombophilia. She also agreed with the heparin and aspirin for my APS. My pregnancy is being monitored since recently, in a bigger hospital, and my OB has experience with APS and thrombophilia, but I'll still check tomo if their ultrasound is "good enough" to check for flows. I'm not in the UK, I'm in a small European county, and my "local" bulletin boards on pregnancy aren't really informative, so I've been reading a lot on mumsnet :) So I really don't know if they can check for flows in all hospitals or just those specialised two who do fetal heart US (one of them is where I checked flows and heart a few weeks ago). But I'll definetely ask around, with my OB and with the haematologist (who I have an appointment next week - just before New Years :))