Antiphospholipid syndrome

[Snufk1n]

Apologies if this is in the wrong place!

I've recently been diagnosed with antiphospholipid syndrome, although I'm currently asymptomatic. I don't yet have children but it's on the cards. Could anyone talk me through their experience of conception, pregnancy, birth with APS? I'm pretty clueless, can't find a lot online, and can only access a specialist clinic once I'm actually pregnant or trying...

Thank you so much!

Hi, what led to the diagnosis if you have no symptoms?

I was diagnosed with APS after my first child was born as I developed a blood clot. I take daily aspirin and had to inject clexane during my second pregnancy. Otherwise everything was fine.

I was having investigations for something totally different, and my APT was elongated so they ran the APS test (three times...)

Thanks you! Were you advised that vaginal birth would be okay?

Vaginal birth both times. The only advice for birth was to not inject clexane if I thought I was going into labour as you can't have an epidural for so long after taking it. I didn't want or have an epidural anyway.

3 miscarriages (plus 4th suspected now on record) pre diagnosis. Rainbow baby born just over 9 months after diagnosis. I had fortnightly scans for the first trimester, and take 150mg aspirin every night (forever, except when breastfeeding) as an anti-platelet to make my blood cells less ‘sticky’, and daily enoxaparin when pregnant as an anticoagulant to prevent clots forming and causing miscarriage or placenta problems. I took these for just over 14 weeks after the birth. I did have to give up breastfeeding as aspirin isn’t compatible, it can cross into milk and cause Rey’s disease which I didn’t want to risk.

Some facts. Without any form of treatment, a successful pregnancy has low odds, around 18%. It makes me so angry that we have to have 3 miscarriages before this is looked for, but that’s a rant for another time. Aspirin alone raises this to about 55%, and when combined with daily injections between 75 and 82% depending on what study you are looking at.

Induction was recommended at 37 weeks - this is following a recent study which showed that after this APS can cause the placenta to start breaking down, increasing the risk of stillbirth. I chose instead to have a c section, I didn’t want the additional clotting risk of being off blood thinners if it was a 5 day induction, and my demographic has a 40% chance of induction turning into emergency c section which carries a much higher risk of post birth clotting. Still low numbers but too high for my comfort. Recovery was excellent and I was confident driving again just 2 weeks later.

I wouldn’t wait until you are pregnant to find a specialist - as the blood thinning injections should really begin as soon as possible (first day of positive test) any delay could be too late to prevent a miscarriage, and if I had started blood thinners even 2 weeks into my previous pregnancies by then the APS would have still most likely caused tiny clots and less than optimum implantation. This is why an APS pregnancy needs to be planned for carefully. I recommend you speak to your doctor well in advance and get referred to a specialist. I didn’t have diagnosis until last December, and due to covid did get a little lost in the system despite being pregnant. Be prepared to be the expert on your condition and be aggressive in making sure you get a doctor who knows what they are talking about - I ended up having to explain to the consultants I saw during covid until I got frustrated and wrote a complaint - apparently this isn’t uncommon though as it’s still a relatively rare condition. After the broth I was in the wind a bit again but I spoke to my GP and I’m now under a haematologist who is aware of my plans to ttc #2 so I can access everything I need to increase chance of success - I’m not waiting any longer than I have to!

Wishing you every success xx

Also in the 3rd trimester you should have scans at least every 4 weeks. I think ideally scans should be every 4 weeks throughout (as was the recommendation for me) but this wasn’t possible due to Covid.

Hi, I lost my first baby just before 20 weeks in June. I had lots of tests after the birth and was diagnosed with APS. I am now pregnant again, and will be having an early scan next week, if that goes ok I will start on clexane injections and aspirin. I will also have lots of extra scans that I would have had anyway due to my previous loss, and, all being well, I understand the plan would be to induce at 38 weeks.

Another APS here, I lost my baby at 20 weeks MMC in april 1st week, later after 5 months when I found out I was pregnant we were discovered I have blood clotting disorder was put on 150 mg aspirin since 5th week and enoxaparin since 9th week, now 22+3d and going good so far anamoly scan went well. I m due in may 1st week and have asked to stop enoxaparin 4 weeks before due date..
Should see how things goes, fingers crossed 🤞🤞
As PP said if you are an APS it's better to start anti coagulant asap, sometimes they offer anti coagulant even before conceiving!!
All the best 🤗🤗

Can you ask your GP to refer you for a preconception consultation with an obstetrician physician, or maternal fetal medicine specialist? Would be best for you to be able to talk it through. That said - it sounds like you don’t necessarily meet criteria yet for the diagnosis but rather just have the antibodies, which may make it a bit confusing (as lots of people can have these antibodies but never develop complications). You’ll need to be able to talk through pros and cons of aspirin/clexane treatment with someone knowledgeable.

Thank you all so much for your replies, and huge sympathy to those who have lost children - I'm just so sorry.

I have been quietly a little devastated by the diagnosis, but it's obviously better to know in advance. I'll definitely try to get an appointment as you suggest @TenThousandSpoons0 and maybe get a clearer idea of what's going on. The haematologist said I definitely had APS, but it also wasn't her speciality so 🤷‍♀️

Thanks again, all

@Snufk1n thank you for starting this discussion, I was trying to find out more about APS, as I was diagnosed recently as well and I’m planning for pregnancy. My sister had pre eclampsia at 31 weeks and based on my laboratory tests I have 6 genetic mutations, thick blood and high antibodies, which leads to my diagnosis with APS.
I just wanted to check how it went with you and whether you found the right specialist. I find it very difficult to find the specialist here and struggling to get the referral from my GP. I have been told that I need first get pregnant and then talk to midwife about my risk factors.
I found that there is London Lupus Centre who also deals with APS (Hughes) syndrome, but not sure if it is possible to get there via NHS. Plus in St Thomas hospital there seems to be special team which are dealing with such pregnancies, but I’m not sure how to get there in advance of pregnancy to start treatment prior to conceiving as @TenThousandSpoons0 suggested.
Thank you ☺️