APS and recurrent miscarriages despite blood thinners -has anyone had success after this?

[midagina]

Hi everyone,

I’m hoping to hear from anyone who’s been in a similar situation.
I’ve been diagnosed with antiphospholipid syndrome (APS). During my first pregnancy, I didn’t yet know I had APS. I developed a large hematoma and sadly had a missed miscarriage at 8 weeks. With my second pregnancy, I was already diagnosed, so I was put on blood thinners (40mg Inhixa), progesterone, and 75 mg aspirin, but I still had a missed miscarriage at 6 weeks.

I’m feeling really disheartened and just wondering if anyone here has been through something similar — and if so, what treatment plan or changes helped you to go on and have a successful pregnancy?

Hi @midagina i’m sorry for your loss. Not quite the same but I was treated in my last pregnancy for APS as I had one very high blood test result. I was on the same medication as you but had a missed miscarriage. I am waiting on cytogenetic testing. I am guessing this pregnancy isn’t being tested due to it being your second pregnancy? It could be that it had a chromosome issue and that a next pregnancy could work. I’m on my fourth loss so I personally am looking at some more in depth private testing. But as you have a diagnosis of APS I hope your next pregnancy works out for you on the medication

I'm sorry for your losses too @Figtree11, after my first miscarriage i had some testing done and everything came back normal, no chromosomal issues whatsoever. The second time i didn't have any testing done, but i had positive anticardiolipin twice and now they put me on a waiting list for a recurrent miscarriage clinic( which will be a long wait) and i'm just losing hope. I'm scared to try again for now until i know what can be done the next time. How are you feeling? Are you trying again?

@midagina ahh I see, it’s so frustrating and upsetting when you think you have an answer and the treatment doesn’t work. Have they given an indication of how long the wait for the clinic will be? How long ago was your last miscarriage? I’m ok thank you, my last loss was 2 weeks ago so waiting for everything to go back to normal, and waiting for the genetic testing & appt with the consultant. I’m not sure what more the nhs can offer me, so I’ve reached out today to a private clinic to do some more in depth testing. We’ve decided not to TTC again until I can get some private tests done

Hey, I had several miscarriages before being diagnosed.
The consultant told us to start injections and asprin from the moment I found out I was pregnant.
i gave birth to a healthy baby girl this August - no complications, a textbook pregnancy and delivery.
it can work x

@LaplandsnowI'm happy to hear that. I hope one day that will be the case for me too.

@Figtree11are you ttc again? I'm still not back to trying , my last miscarriage was in september, but i'm still waiting for some tests. What about you?

I am just recently TTC again, although I’m not confident with the decision. My test results came back as Turner’s syndrome, which my consultant said is basically bad luck. And to try again & hope it’s a genetically normal one next time & that hopefully the blood thinners work

I saw 2 different specialists they both confirmed aps diagnosis (persistent cardiolipin igm and igg antibodies). They have planned for me to start aspirin and heparin (clexane) on positive test. I am worried though if I will have positive outcome if I don't take aspirin before conceiving. Any positive experienced with taking the medication once you find out you are pregnant?

Hope nobody minds me jumping on this thread. I just wondered how everyone was getting on. I’ve recently had an APS diagnosis through recurrent miscarriage clinic. I’d had a MMC in 2020, then DD born prematurely in 2021 and two early losses in 2025. I took aspirin daily as soon as my last set of bloods for blood clotting were done so would’ve been a week after ovulation maybe. I then found out I was pregnant and 2 days later heard from the hospital where they confirmed APS. Started on tinziparin injections as well as 75mg aspirin that day then added progesterone following some spotting and a positive scan at 6 weeks. Repeat scan at 9 weeks showed baby stopped developing at 7.5weeks. Waiting on genetic testing and a plan from the hospital but expect they’ll just say try again with the same meds.

Did you just have the cardiolipin levels elevated 12 weeks apart? I saw Professor Regan and advised to take 150mg asprin on positive test in combination with low molecular weight heparin injections. We will be trying soon but they advised strictly not to take aspirin while trying

Hi, i've recently had my first appointment at a recurrent miscarriage clinic, and had a blood test done (for some
reason they want to triple confirm my cardiolipin levels) so now I have to wait 6-8 weeks for the results once again. I have no idea if they want to do any further testing or what their plan is for the future pregnancy, but my OB mentioned plaqenil and prednisolone from another clinic, i do hope that will be included in the treatment plan. So for now we're still not being able to try again. It's so annoying how everything takes so long.

Yes the last one being in January. I don’t know if they’ll suggest upping the aspirin or whether they’ll say stick to 75 but I suppose I’ll have to wait and see.

That’s frustrating that they want three. I haven’t heard of those two so not sure what they do. It is so frustrating when all you want to do is keep trying but hopefully they’ll come up with a plan soon. I’m not sure I can face trying again if they say just do the same thing, it just feels like it’ll end in more upset.

I was at St Mary’s and was diagnosed with this after 6 mc. I had an endometrial scratch just before my successful pregnancy. It was part of a trial so I don’t know if they offer it outside of IVF. I still took the aspirin in the successful pregnancy. I don’t know that’s what made it stick but it was that cycle. I didn’t have any other drugs. I was 41.

I had also read It Starts With The Egg and made some diet changes in the months leading up to this. Again I don’t know what made it stick or just luck.

I hope things work out for you. It is so brutal.

I would be really scared to try again with the same treatment plan as before. My second pregnancy i was on 75mg aspirin, 400mg progesterone twice a day, and blood thinner injections(inhixa 40mg), if i got told to try again with the same plan i'd be terrified. My OB told me i'd be on double dose of aspirin next time, but also told me about these medicines I mentioned before, i do hope i will get them prescribed as i heard it helped a lot of people. I'm suprised they haven't mentioned them to you.

What tests did they order? They did everything and thromboelastogram test plus PAI tes, doing these tests the Professor found that the clots can cause inflammation and that's why she put me on 150mg asprin plus heparin on positive test. But personally I think it matters when you start these medications, that's the gut feeling I have but I ordered a self check pregnancy test which is a blood test can tell you if you are pregnant earlier than an early pregnancy test. So once that's confirmed I aim to start the treatment. I am still not sure why all doctors I saw were so against aspirin up until positive test.. they all seem to think that it may interfere with the process at the beginning increasing risks of bleeding

What tests did they order? They did everything and thromboelastogram test plus PAI tes, doing these tests the Professor found that the clots can cause inflammation and that's why she put me on 150mg asprin plus heparin on positive test. But personally I think it matters when you start these medications, that's the gut feeling I have but I ordered a self check pregnancy test which is a blood test can tell you if you are pregnant earlier than an early pregnancy test. So once that's confirmed I aim to start the treatment. I am still not sure why all doctors I saw were so against aspirin up until positive test.. they all seem to think that it may interfere with the process at the beginning increasing risks of bleeding

Whereabouts are you? I’m in West Yorkshire and was automatically referred to Mid Yorkshire Trust but all the local APS specialists are at Leeds. The genetic testing also happens at Leeds. The team at Mid Yorkshire have been so helpful and lovely but I think I need to be being referred to Leeds now knowing about the APS and since having had another loss.
I’ve had a quick read. I didn’t even realise there were other things to try. I assumed it would just about getting aspirin and heparin dosage right. That has left me feeling more hopeful.

Glad it worked out for you in the end 😊
i do need to make some changes and be healthier. I do well for a couple of weeks and then a negative test or worse just set me right back!

Yeah I was thinking about this too. I had some spotting around when I was due on this time which happens every month so I was so sure I wasn’t pregnant that I left it until a few days after. Suppose it could have been that I didn’t start it quick enough.