10 weeks pregnant with antiphospholipid syndrome - advice please

[user1470147116]

I’m 10 weeks pregnant.

I have Antiphospholipid Syndrome (3 early miscarriages at 5 weeks and numerous tests over past 2 years show I have high anti cardiolipin antibodies)

I’ve been on aspirin and heparin since getting pregnant.

I saw the APS team at St Thomas’s Hospital and they want me to stop taking heparin at 14 weeks but continue to take aspirin till birth.

I thought women who have APS were supposed to stay on heparin until the birth?

St Thomas’s has biggest clinic for APS so I feel they must know what they are doing?

Any advice appreciated!

Congratulations on your pregnancy and sorry to hear about your miscarriages. Have they said why they want you to stop it? I’m on aspirin and heparin until 6 weeks after the birth (excluding stopping during labour). I honestly wouldn’t be stopping without a second opinion & I would fight to stay on it if they told me to stop.

Have they spoken about the other risk factors of aps like pre eclampsia and intra-uterine growth restriction? How do they plan to manage these without Heparin?

All of the research I have found says to continue until 6 weeks after birth.

I agree with penelope, I'm 19+4 and will continue Heparin until 6 weeks post natal, what were their reasons for not continuing Heparin? Was the doctor knowledgeable did you feel?

NB I have Factor V Leiden not APS but understand that the medicine for them both is the same. I went through St Mary's RMC and they wrote the letter for Queen Charlotte's to continue with the Clexane. I am now loosely thinking of transferring to QCH.

I'm not a doctor so don't know your personal bloodwork etc but I would really push for the prescription to be continued, TBH I would even get the prescription privately if St Thomas' won't give it to you. Alternatively I've just heard that UCH are very good at being risk averse so maybe change to them. How much of the drug do you have left? Definitely ask for some every time you see anyone who can give it to you.

I've got a thread over in Childbirth Choices that you may want to check out in a couple of months (it includes mostly me freaking out but lots of good advice on birth choices with a thrombophyllic condition).

And lastly congratulations on your pregnancy :) I know how hard and stressful it is after multiple losses but it's so good you're further than you've been before. If you want any more of my advice please do DM me!

Thanks for the advice PenelopePuddleduck and MulderitsmeX

Are there any other women out there with Antiphospholipid Syndrome?

Am now 12 weeks pregnant and St Thomas's Hospital want me to stop heparin at 14 weeks which I am very nervous about doing.

I don't know for a fact user but the NHS info here www.nhs.uk/conditions/antiphospholipid-syndrome/treatment/

Suggests that if you have antibodies but no history of clots, aspirin is safer in the long-run than heparin. It seems to be a risk-benefit balance, but please talk to your team again so they can explain the rationale.

I have APS. I took just aspirin with both mine. I did start heparin with my first but stopped at 20 weeks which my consultant was happy with. I had been in NZ and my doctor there said I was only marginally above normal. When I got back to UK they were much more of the opinion that this is protocol to take both. I got fed up being a pin cushion and so decided to stop. I had extra scans from 28 weeks which you will be offered..obviously you might want to get a second opinion as I don't know your bloods..