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

Hey! I don't have a success story (yet) but didn't want to not reply - I am currently 21 weeks into my 3rd pregnancy after two losses at 10 and 16 weeks.

I did the same, started the aspirin prior to conception at 75mg, went up to 150mg when I found out I was pregnant.
I also started the progesterone as soon as I found out.

We then had a viability scan around 6 weeks and once that was ok I was prescribed the Inhixa (think its the same / similar to heparin) I've been doing them since every day, and will have to do it 6 weeks after but apart from some seriously nasty bruises, it's been absolutely fine.

My husband does them for me if I can't (if I'm being a wimp!) but they're easy really.

I did have some bleeding during this pregnancy, and they always advised me to miss a dose if I was bleeding, but it was fairly obvious when I needed to do that....

But if you have any specific questions let me know.... and good luck!!!

I have APS and after TTC for 3+ years & waiting to start our IVF, we got our positive on Christmas Eve. I'm on daily heparin and 150mg of aspirin with a consultant led pregnancy/Labour. My consultant has said from 16 weeks I'll be having scans every 2-3 weeks until due date. So far so good although a few visits to EPU in the early days. I've my 12 week scan next week and we last saw baby 2 weeks ago with a beating loud heartbeat.

if you look on the APS org website, there's a list of all the leading consultants for you area noted. I ended up contacting UCLH and getting accepted as their patient when I was first diagnosed despite living up north and they are fantastic. A lot of my care is remote but they arrange tests locally and I do throughly believe it's due to them I've been in this successful position as I found initially, most Drs know of APS but not generally understand APS.

Wow 🤩 thank you so much @@hereistopositiveenergy @gippstick your advice is amazing & so reassuring!
I'm currently TTC at the moment so fingers crossed won't be too long! Did it take you long to get a positive?

The miscarriage clinic have advised I do progesterone too when I'm pregnant.

I looked on the aps website and there are some nhs consultants in my local hospital too.
I'm wondering when I do get pregnant as in a positive Test should I write to be asked
To be under them ? As I'm new to this all I knew was that I would be consultant led but couldn't specify a specific one? but I didn't no if they would accept me as they state they are rheumatologists and haematologist consultants on the websites.
All the miscarriage clinic have stated is as soon as I get pregnant to call EPU I'm guessing for meds and injections.
Congratulations also to you both also wishing you both a stress free pregnancy!! Xxx

So for me, I was diagnosed when living in the North West and had a fantastic consultant team that I didn't know much else. When I moved to the North East, the first time I ended up in hospital as I had an another suspected PE they didn't really know what to do with me and even admitted it. I felt let down so I found UCLH on the list and self referred - the reason I chose them was the main lead consultant there was under Dr Hughes when APS was first ever labelled so she was extremely familiar with so much and happy to support.

If you have an APS marker, just contact them and ask to be referred. Some need your GP to fill out the form but I found mine was helpful when I went and asked them to refer to ABC person (partly because it meant my care would all be handled without a need for them except issuing medication prescriptions)

As soon as we found out I was pregnant, I contacted UCLH and they arranged a change in my meds with 24 hours and my midwife had me in with a gyne consultant within 4 days at 6 weeks 3 days.

In terms of conceiving, it took us a while but I don't think that's APS related. With the right medication, care and looking after yourself, you should be ok! It's quite common for woman to be diagnosed following miscarriages but it doesn't mean everything's over for you. Naturally there will be risks but my consultant reassured me medicine is advanced to successfully see an APS woman through pregnancy now, with the meds in place to keep you safe. There's a few APS UK groups on Facebook which I found good to some information but also, be mindful people post when things seem negative and they need support - doesn't mean everything is scary and negative if that makes sense xx

Oh and to add your haematology consultant will be different to you pregnancy/labour consultant but they will work together when the time comes. Main focus is to get your haematology sorted so you have everything under control

@hereistopositiveenergy thanks for informative post! Just to check re UCLH: Did you go to UCLH for haematology and to check what could be done BEFORE you got pregnant? Did they then put a treatment plan in place/put on meds?

Also it feels like my EPU (which diagnosed me after miscarriages) are only concerned with what will happen when pregnant, should we also be seeing a haematologist anyway for when not pregnant? As potential for blood clots sounds quite serious!

hey!

so yes, UCLH saw me prior to being pregnant. I found out I had APS following a break to my foot and then getting bilateral PEs. It was put down as provoked and then they kept coming back so I was tested and informed I had APS. Moved to another part of the north and my care went downhill so I reached out to UCLH through their self referral part and had a lengthy appointment where they retested me for everything and they confirmed again APS & set a very details plan on action. I'm now under a respiratory consultant and a cardiologist as well as haematologist - all based at UCLH - because in my circumstances the reoccurring blood clots done damage. They see me face to face once a year but very good at aligning their appointments for the same day/2 days so only need an overnight hotel and rest is by either video call or phone. They also work with my local GP and hospital if I'm admitted. Couldn't fault them!

EPU will only see you whilst pregnant yes. You can find a local haematologist but honestly in my experience mine didn't know enough about APS compared to UCLH. I've been 3.5 years free of clots, my treatment has been consistent and steady plus I'm now pregnant. Yes high risk but again, it's all being managed well.

This is who you want as a lead for UCLH. Honestly one of the best in the UK

www.uclh.nhs.uk/our-services/find-consultant/professor-hannah-cohen

@hereistopositiveenergy @gippstick hi 👋🏻 I just wanted to update and say I'm 4w 4 days pregnant!! I'm on progesterone & aspirin daily.
I spoke to miscarriage nurse and waited 2 days for a callback to say they will be in touch soon with next week with an appointment for a 6 week scan.
They said they will then give me heparin injections.
I've checked the Aps website and there are some consultants
In my hospital, they seem to be rheumatologist consultants. I've not been under any rheumatology previously got tested for it after repeat losses. Could I still
Reach out to one and ask to be referred ?

Thanks

Sorry I name changed too !

Hi @indieray in pretty much the same situation as you! Have confirmed APS after 4 losses

on cyclogest pessaries day and night
150mg aspirin until birth
heparin one daily until birth

im meant to be 6 weeks, but the scan today put me back at 5 weeks. Can’t help but over think as there was no heartbeat detected and each day seems like a milestone at this stage so to be put back a week feels heart breaking.

how are the jabs getting on? Have you got used to them now?

Hi @LethargicButAwesome I've got my viability scan very soon at 6w was told they won't give me heparin until they see a viable pregnancy so not had any yet to say! I know it's easy for
Me and anyone to say but stressing won't help anything as we cannot anything! I'm sure will all be fine , stay positive

I know! But can’t help but stress :( I’ve read lots of not so reassuring statistics for APS

I feel slightly better in that they confirmed the location is correct and I have been prescribed heparin, only silver lining. Pumping myself full of all possible drugs to keep this one sticking.

let me know how your viability scan goes fgrs x’d for you xx

Congratulations @indieray !!! It sounds like you have it all under control and all the medication is on its way... I started my Inhixa after my viability scan as well so that seems to be the standard.... I won't say I've found my pregnancy easy at all, but the medication makes you feel like you're doing something different, and you'll be watched closely I hope....

@LethargicButAwesome Congratulations to you too! I had the same, I was put back almost a week at my first scan and it's just another thing to worry about... different pregnancy, different baby, different outcome :)

Thanks for the reassurance @gippstick ! I’m counting the days until my next scan, feels like an AGE away.

how far along are you now ?

@LethargicButAwesome I'm 28 weeks.... which felt like one of the big milestones
It's an unbelievable amount of stress and I won't lie it doesn't really go away, but every day is one day closer!

Congratulations for getting there @gippstick from everything I have read it’s risky until the end so no doubt we will be stressed until we are holding bub in your arms.

28weeks feels like a lifetime away, but each day that passes I feel a tiny minuscule of reduced stressed. I have recorded all the dates of my losses and so far I have passed 3/4 dates (if I go by my timeline and not the scan timeline). Just setting mini targets…my next one is to reach the end of the week then reach scan date! It keeps me going completely mad.

I feel I get really down when I think about it a lot, work is a good distraction albeit I’m not 100% engaged, have next week off so will no doubt drive myself mad.

So they dated me 5w3 days. Said they not sure if they goin to develop or not yet as they can only see a sack and too early to see a heart beat so will scan in a week again. My periods have
Been messed up.
Giving me heparin tho today anyway. I'm not sure whether to be sad or scream or just cry.
I may book a private scan as the wait will
Kill
Me

Oh @indieray big hugs. I think we are in exactly the same position. I had my scan on Tuesday they said only a sack was visible and no heartbeat. Obviously driving myself mad as according to my calculations I was 5w and 5d and was hoping for a heart beat. I know exactly when I ovulated so my calculations are according to that

mind can’t help but wonder :( …. I need to wait 2 weeks to confirm……today has been a very long day. I didn’t think of a private scan…might need it for the reassurance. But equally don’t want to have too many scans as it’s suggested this could increase the risk of miss-carriage.

hugs 🫂 and lots of prayers. Sticking with the heparin, aspirin and cyclogest for now.

keep me updated!!

Hope scan goes well @indieray xx I have another week to wait for mine! Don’t ‘feel’ overly pregnant :(

Thanks very much @LethargicButAwesome xx hope your ok x

So unfortunately there was no growth progress or heartbeat. And she saw two sacs so confirmed it wud hav been twins. I've got to go back in a week for another scan to confirm n to choose my options either medical management at home or to have surgery. I am upset but I kind of had a feeling something wasn't right.

Oh @indieray that’s heartbreaking. I’m so sorry to hear, nothing I can say to reassure I know. I hope your journey from here is easier and you get your bundle of joy soon. Thinking of you xx

Hi how are
You doing ? &
@LethargicButAwesome xx

Hi I’m looking for a bit of advice, I am currently pregnant following a third transfer from ivf (13dp5dt). I tested positive for the anticardiolipin antibody and also had an antinuclear antibody test which was positive immediately before I did the transfer. I know usually they retest after 12 weeks to confirm APS but they won’t do this if I’m pregnant. I’ve been on Inhixa since transfer (40mg a day) plus aspirin 150mg and the usual progesterone and oestrogen for ivf. I called the clinic today and they are sending me more meds but saying to stop them all at 12 weeks (10/6/23) I appreciate this is a while away but whilst it is usual to stop progesterone and oestrogen, should I be stopping the heparin or should I be pushing to stay on it (given I’ve not definitely got APS but I’ve had positive on two markers on the blood tests)?
I haven’t spoken to my gp yet but the next appointment I can get online is 18/5 which wouldn’t give me much time if I need to see a specialist.