Antiphospholipid syndrome (APS) in Pregnancy.

[indieray]

Hi I'm currently trying to conceive again after
Having my 3rd miscarriage last year.
I've had 2 tests done one private and one NHS and both are positive for APS,
NHS want me to do a second test too. But if I do get pregnant I will
Be treated with Heparin daily.
I'm already on 75mg of aspirin just in case
I do conceive.
Does anybody have any experience with successful pregnancies with APS? Or
Any advice on TTC or pregnancy with it.
Thankyou

Are you going in a line across your abdomen, if you go across right to left then start again each spot can get about 2 weeks recovery before you inject in the same place again.

Sometimes I bruised badly sometimes not. We're not trained after all but following that pattern generally worked for me.

@YoBeaches I was alternating sides, but run out of space so I’ve been doing it directly below my tummy button for the last 3 days (which hurts less and hasn’t bruise). The chemist was impressed with the bruising - it’s about 6-8cm square on both sides 😭 I’ve had to buy swimming costumes for my holiday on Thursday because I’ve definitely not got a bikini ready body!
The chemist said I can go up the side of my tummy button too, so going to try that and hope the bruising goes, then maybe I’ll try your method of working my way across if that is better. Switching sides, you forget where you have put it and I’m sure we’ve been injecting into bruises and making it worse.

Haven’t read the whole thread but had 3 MMC and after second discovered that I had APS. I was warned that taking aspirin wouldn’t prevent a “normal miscarriage” and went on to have a third. Generally for me there was no issue in getting pregnant despite my being in my 40s. After my third MMC my lovely Dr tactfully suggested that I might want to think about donor egg. I ended up at a clinic in Athens who disagreed and suggested instead that I have a hysteroscopy and that any scar tissue be removed. I did that and within a month was pregnant with DS (now 11). I had him at the age of 45!

I took 1/2 an aspirin throughout my pregnancy until quite late on ( can’t remember exactly when I was as advised ti stop) and had an extra scan around 24 weeks. I then had to inject Heparin after giving birth (elective C section as DS was breech).

So a success story here. I hope all goes well for you all going forward. Xx

@Picoloangel Congratulations! I love a good success story! ❤️

@NorthernDuckling no advice, luckily I’ve got plenty of (ahem) padding but it’s all bruised and one wrong spot leaves my belly the colour of an aubergine for the next month. X

@Picoloangel a lovely success story ❤️ given hope! Albeit never heard of this treatment!

i had a really stressful week on Saturday after a busy day got quite sharp pains they started during the day but became regular in the evening, the pain was around the left ovary….so I’m really hoping and praying it wasn’t anything serious and just me pushing myself too hard. Taking it very slow and easy now. My symptoms are still sorta there but won’t have any consultation until I see the consultant for a scan on Tuesday.

@NorthernDuckling I’m bruised all over. I have a fair jelly belly myself but hasn’t stopped the pain or the bruising i fact I found where there is more fat It hurts less but I bruise more! The most recent thing I have noticed and I have no idea why…is I bruise less on the right side so maybe after experimenting your find your ‘area’

Thank you both. I have made my peace with my miscarriages now. I’m convinced the child I have is the one I was always meant to have. I also have so much from parenthood that I don’t would have been quite the same if I’d had an easier route. Yes, DS is an only but there are worse things.

Good luck all. The clinic I went to was Serum which has a very good reputation but it’s obviously over 10 years ago that I was there. They also did some sort of small abrasions on my womb lining which meant implantation was more likely. Whatever they did it obviously worked.

Just thought I’d share. Returned from my scan - no heart beat, scan showed internal bleeding and yolk sac far from the Fetus. Was meant to be 9w5d

@LethargicButAwesome I’m so sorry to hear your news. I had a huge bleed on Thursday (lost about 1/2 a pint of blood but they think this was partly due to heparin).
I had a scan on Saturday which showed the gestational and yolk sacs were still there but I should have been 6 weeks so it’s slightly behind. We were amazed that it wasn’t over, I have never seen so much blood! I have another scan Monday to see if things have progressed but we are a bit in limbo at the moment.

@LethargicButAwesome oh my god I've on n off checking on this thread and I can't believe it I'm so so sorry 😣 it's so fukin cruel ! I am had my loss 2 weeks n I still get upset most days. Please look after yourself. Have the hospital given any information about what happened ? Xxx

@LethargicButAwesome i am so sorry to hear this. I have no words other than be kind to yourself. So sorry. X

Thankyou @indieray and @Picoloangel it sucks. I went into the appointment feeling a bit pessimistic my nausea had completely gone and a week and a half ago I got quite painful cramps that lasted a long time. I was hopeful as they improved when I lay down and nothing since but I think that was when it happened as the consultant said it looks as though it has been a week. Another strange change I noticed was with the heparin, I was getting very bad bruising that lasted for week, this past week however I’ve had almost no bruising when injecting, I thought that was a little odd….but the pregnancy hormones must have made the bruising worse.

@indieray i mentioned the starting heparin earlier and the consultant said it would have made no difference at all as initially a heartbeat was detected as the heparin ‘done it’s job’. Also I have no bleeding at present, all my other losses have just happened naturally so not sure how to manage this one. Hope now I have stopped all the medication it just happens. there remains a tiny part of me that just keeps hoping that maybe they got it wrong, but I think most people probably feel that way.

@NorthernDuckling really hope everything works out for you.

For ladies reading the thread and have APS and are trying - I had 4 years of infertility before I managed to fall pregnant and since my first positive I’ve now had 5 losses. the thing that made a real difference from infertility to actually managing to fall pregnant was 1. Ovarian drilling 2. Hijama and massage the first must have shaken something inside me the second must have helped get blood flow into the ovaries. After ovarian drilling I had 6 months of nothing but combined I’ve managed to fall pregnant Everytime I went to a hijama session.

@LethargicButAwesome it's horrible & I'm so sorry.
I was advised by another consultant prior to getting pregnant to start heparin as soon as I get a positive test right at the start of pregnancy but was ignored n told to wait by someone else's til 6+w which too late I believe this was the cause.
I then asked like you if it would have made a difference they went away to ask another consultant and advised next time I'm pregnant go start injecting as soon as I get a positive test which I will be but in my mind shows me they don't have much experience of APS pregnancy or so in my case they won't admit.
Also I won't ever be a 100% this was defo the cause but it's still heart breaking 💔 but I've joined this fb support group n it's amazing there's plenty of them and good advice. Some women starting heparin at 10/12DPO and also advising to get the book it starts with the egg. I know you won't have any faith right now In a lot of things but please listen to your body look after yourself and I know one day you will get miracle rainbow 🌈 baby. Don't give up.

m.facebook.com/groups/319378129139590/?ref=share

It Starts with the Egg: How the Science of Egg Quality Can Help You Get Pregnant Naturally, Prevent Miscarriage, and Improve Your Odds in IVF amzn.eu/d/eM6XxWV

Hello, I hope everyone is well, I’m really sorry to hear about your loss indieray. I am after a bit of advice, I’ve had a fairly rocky past few weeks including a stay in hospital for heavy bleeding and passing clots the size of my palm. But baby still clinging on and have my first appointment with the consultant tomorrow (14 weeks), I honestly didn’t think I’d get this far. Does anyone have any advice on what to ask him? At the moment I’m just feeling a bit overwhelmed and can’t really think what to ask. TIA

Congrats @NorthernDuckling for getting this far! The link to the fb page @indieray posted is very active and has lots of suggestions etc. can be a little overwhelming and a lot people are from the US but might give you an indication?

@NorthernDuckling Congrats!

At my first consultant appointment it was them confirming a plan of action but nothing really set in stone. I was given a prescription to continue a high dose of injections and then she booked me in with a different consultant (who I have now) for once a month checks from 20 weeks and then regular growth scans from 30 weeks. I'm 28 weeks now and a plan for birth has been put in place & im monitored closely.

Thanks @LethargicButAwesome and @hereistopositiveenergy I hope tomorrow goes well. I just want to know it will be ok but they won’t know and that’s the hardest thing.

@hereistopositiveenergy you’re nearly there, on the home straight. I’m struggling with how far I still have to go. Feeling a bit low, still on off bleeding and now have a urine infection.

Hi currently 4w2d with APS im on asprin injections and progesterone , i have a 6w1d scan booked and so everything feels good. x

@indieray hi! Checking in as in a similar situation. Did you end up having positive progress? :)

Hello,
I will open a new thread, but if somebody else is reading this, I'll ask here just in case.
I've been diagnosed with APS in the middle of my pregnancy - and started on blood thinners and aspirin at 18 wks.
Did anybody start their therapy this late in, and was the pregnancy successful? Does anybody know if there are some tests/exams I could do to see if my placenta is working fine? I'm scared that I'm too late with the medication and that I'll have a late miscarriage/stillbirth

@ParanoidAndroid39 this didn't quite happen to me but didn't want to read and run plus hopefully I can help explain how it works. I had 3 miscarriages then was diagnosed just as I found out I was pregnant again. I started treatment at 6 weeks pregnant and had healthy baby.

If the baby is fine now and is roughly on track with growth. Then the treatment should maintain that. aPS causes tiny blood clots that form through the umbilical chord and can impact the flow of blood from you to the placenta and therefore cause problems for maybe. If you had blood flow tests/scans they may have had concerns about the rate of flow.

So the medication will thin your blood to maintain flow and they may consider adding an anti-coagulant like heparin that also breaks down any clots if they form.

You will have more regular checks now- growth scans, and bloods to check your platelets stay within range.

But overall, now you have started treatment, whilst you are a high risk pregnancy, with the right treatment and care everything should be fine.

What did they say at your last round of scans and checks?

To add, if baby's growth is ok, then placenta is working fine. If the blood flow checks are ok, then blood flow is good. In which case your treatment is precautionary to prevent any problems.

If you've never had a blood clot before, and not had a miscarriage to date, then you are the lower end of 'high risk'. If you have had these things then your personal circumstances obviously affect your risk assessment.

You will have to stop the aspirin at around 34/36 weeks as you get ready to birth, and through monitoring they may consider planned induction, but youll make those decisions nearer the time.

@YoBeaches thank you so much for the answer - that was the information I was looking for. The fetal growth is on track and the blood flow through the cord is also looking good. I had two miscarriages, both of them early - one at 7 weeks and one at 5 weeks (that one was treated as a biochemical). I had a scan today, and I managed to ask my OB (MFM) a million questions, and she confirmed that they check for the size of the baby to see if its lagging behind - and that is the first sign of placental insuffiency. I was scared that the placenta will "give out" in a day, with no warning signs, and that the baby will basically suffocate. They reassured me that it almost never happens momentarily and that they are/will be keeping a close eye on me for any signs of that. So if things start to go wrong they'll do an earlier induction. And you explained the situation so well, thank you again :). Also, not to forget, I'm currently on low dose of anticoagulants (enoxaparin) and the aspirin, which they will, as you said, stop at around 34 weeks. :)

Didnt want to read and run, APS is scary, but at this point in time, you dont sound as tho you are at any disadvantage.

So your treatment plan is exactly the same as mine was. It's really good you had the diagnosis confirmed, it's a very manageable condition and perhaps like me they deem it only to affect in pregnancy. I don't have any other clotting concerns to live with, just awareness and always mention it from now on when you personally have health appointments as it can occasionally impact choice of medicine etc.

I was planned for induction at 39 weeks, 7but she came by herself at 37.5 weeks. Her measurements at birth showed she hadn't grown since 34wkk scan, but babies growth does tend to slow down towards the end. She was still a healthy 6.15 lbs.

Separately, it's normal to have anxiety in pregnancy after miscarriage, and more so when you have a diagnosed condition, I found practising hypnobirthing really helpful, a bit like meditation, and it prepared me to deal with whatever might happen if the birth wasn't straightforward or any complications became apparent. Fortunately it was straightforward and I gave birth naturally with minimal pain relief and no interventions needed. Doesn't work for everyone but I had a fab experience and helped me stay calm.

Wishing you all the very best! Congrats on your baby! Feel free to post back here and let us know how you are getting along x

Hi all, I got diagnosed with APS at the back of last year following 3 miscarriages. Obviously I have started aspirin and heparin and progesterone will be to be started if I ever get pregnant. But I was wondering if any of you are over 40yo and been told to rethink to get pregnant? I am in my early 40's and I am wondering if it makes me more at risk now I know I have. APS. I am really worried about it as the NHS didn't even mention anything! Thanks!