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

Hi @indieray thanks for asking. We saw a little heartbeat today. First time we have got this far! According to my dates I’m almost 8 weeks but scan has me at 6…going back in 2 weeks time to ensure sufficient growth. Really hoping it’s 5th time lucky.

@NorthernDuckling I have confirmed APS, however I was told if I get pregnant before my 2nd blood test I would be treated as though I have APS. I have been told I need to be on both aspirin and heparin until Labour. Are you in the UK? If so, try and get an earlier appointment or ring the early preg unit at your local hospital-you can self refer yourself on the basis of your APS diagnosis

@NorthernDuckling I know people who were pregnant after losses, without APS, but were on the heparin during pregnancy so don't see why they would stop you
Personally I would push for it but I'm not sure on the risks so do some research

Either your early pregnancy unit, or once you see a consultant (if you will have one) will be able to arrange for you

@NorthernDuckling diagnosed APS in 2019 and on what I hope will be a second successful pregnancy. I wouldn’t come off the heparin/lovenox etc. as you say you’ve had a marker already. Even though I have APS I can’t self refer to either EPU I’ve been under, at my original hospital (Leeds) it had to be done by my recurrent miscarriage clinic. At my new one (lancs) it needs to be done by a consultant.

I don’t have experience of IVF - are you referred to a regular hospital antenatal unit? I think IVF pregnancies are normally consultant led so in the first instance ask your clinic to continue to provide the heparin/lmwh but see a midwife as soon as possible and ask them to set up an appointment with a consultant asap - I moved house when I was 12 weeks and needed to see a consultant to get the ball rolling for meds so my new midwife did this for me, she set it all up by phone while I was sat with her. I saw her on the Friday and was with the consultant getting more lmwh on the Tuesday.

If your clinic are funny about it you should get more joy from the consultants at the antenatal unit or the EPU in the hospital but you might need your midwife’s help to get you through quickly. Good luck x

@indieray so sorry for your loss. It’s really unfair. After I was diagnosed I take aspirin 150mg at night, forever, to recent sticky platelets, with lovenox or similar from a positive pregnancy test. I had a successful pregnancy right after diagnosis, followed by a loss on the same protocol in August, which I wasn’t expecting and it is really really shit that it can still happen x I’m now 26 weeks and baby is coming at 37 weeks (optimum timing for APS). It’s really hard now but remember that your odds of success have gone from nearly nothing (less than 20%) to about 75/80% with treatment. Got everything crossed for you xx

Thanks everyone, @Littlegoth I’m in Leeds! This is the first positive test in 5 years so I’ve no idea what I’m supposed to do!
DH also has blood clotting issues (he’s had DVTs a few times) and I’ve read that his DVT can impact the pregnancy but the treatment is still heparin for me. It’s the first time I’ve taken heparin and the transfer stuck so we are quite excited and obviously want it to work.

I’ve called the clinic this morning to find out what the next steps are, when I should speak to the gp, when I will be discharged etc and waiting for a nurse call back. Think I’ll try to get a gp appointment to discuss it, I’m also 36 in a couple of months so my age, the ivf and APS puts me at a high risk pregnancy.

@NorthernDuckling Dr Shilitto and Dr Aggarwal at Jimmy’s run the recurrent miscarriage clinic. They are very very good and I wasn’t happy to leave them when I moved! Dr Shillito is also a consultant OB in the antenatal department (as well as overseeing the educational programme) so ask for her to be your consultant. You will not get better for APS in that area, she’s pretty much my hero. I was 38 when diagnosed, first baby arrived a couple of months before I turned 39, and I’m 41 with this one x

@NorthernDuckling get your midwife involved if things aren’t moving this week x

@NorthernDuckling it may be tough to get support from the reoccurring mc team if you have not miscarried before. Sucks I know.

I totally understand your concern it took me 4 years to get my first positive which resulted in a mc, then 5 years resulted in the remaining 3 mc so the thought of losing this one must be killing you.

my advice would be call up, challenge and hound whoever you need to. Most midwife’s won’t see you until 8 weeks - book that appointment in ASAP so the dates in the diary. A referral can come from here.

try and get an urgent day appointment from your gp, and ask him to refer if you ask lots of question around APS and PG they often do this without hesitation as they are not the experts.

try your epau. They are usually quite good but you may need to press your concern to be scheduled in.

for now you are pregnant and you have everything a consultant would give you so try not to stress too much, your planning for the next stage - there’s nothing your ‘missing out’ on atm.

Hi I was told after.
4 tests confirmed I have APS then it will be heparin til I give birth I conceive naturally so I'm not sure if it's diff to ivf but if your worried fight your case and stay on them as I don't think they do much harm but double check! Congrats both @LethargicButAwesome & @NorthernDuckling

Were you told you could start heparin earlier from a positive test or had to wait til scan showed viable pregnancy ? Xx

Thanks everyone, I’ve spoken to the nurse at the clinic and she is checking with the doctor because my blood results hadn’t been flagged so the stop meds at 12 weeks advice might be wrong.
@indieray i started heparin on the day of transfer so effectively 5 days after ovulation and aspirin on the positive test.

I don’t think I need to have a referral to another specialist, I’m on all the meds they could put me on and there is literally nothing they can do to stop a miscarriage, I just feel a little lost. The ivf clinics aim is obviously to get you pregnant and then there is this weird time between that and the gp/ midwife where you are still under them but they’ve sort of delivered their service iykwim!

@LethargicButAwesome The EPU won’t see her without a referral. It’s very frustrating. I’ve been stuck behind the gatekeepers there too many times.

@NorthernDuckling Just to clarify as I’m aware my post referred to the recurrent miscarriage clinic. Now you are pregnant, if that pregnancy is managed by general hospitals rather than through the IVF clinic you would be consultant led anyway. All the hospitals in Leeds come under the Leeds teaching hospital umbrella anyway. It’s more to make sure you get the right attention for the rest of your pregnancy as APS pregnancies are high risk throughout and especially during the last trimester. things to consider are for example timed delivery - Leeds normally provide growth scans at 28, 32, 36 weeks and may recommend induction at 37 weeks for APS. Like PP said you have everything you need for now, it’s just about getting the care for the next stages in place x

So when I was at the miscarriage clinic choosing my options yesterday(I can't face another d&c in hospital so chose to go home with meds) I asked the doctor if it would have made any difference me being on heparin from a positive test not waiting til 6 weeks for a scan then to start heparin as I was told to do before and this pregnancy failed in miscarriage again.
She said "let me check with the consultant"
She went away came back and said "consultant said start heparin as soon you get a positive test "
In my head I'm a screaming why the f wasn't I told to do this prior when I asked !?
I will never ever no if I lost this pregnancy due to me not starting the heparin earlier than 6/7 weeks and my APS was causing clots early. I won't ever know but now the advice has changed n it's so hard.

Oh @indieray that’s so tough to hear. I was in a very similar position earlier this year where I miscarried before I could get a viability scan, I pleaded with the EPAU to start me on SOMETHING but they didn’t. I must admit I have my faith, which is very dear to me and I was able to accept it by truly believing something better will come along.

I really hope things work out for you. Did you start aspirin straight away? I started cyclogest and asprin at positive test.

thinking of you hugs

@indieray I'm just so sorry this is happening to you

I dont know enough about all this but I managed to get a bit of a debrief appointment (after a lot of begging and pleading, and a formal complaint) after my second trimester loss and the consultant wrote a letter with the plan for the next pregnancy. That way as soon as I fell I took that letter with me to anyone and everyone to get the medication and scans etc.... im convinced they wouldn't have listened if it wasn't for that

I know that's the last thing on your mind but I just want to try and give you some tips

For what it's worth, and i know my words mean very little now, I do know that starting the heparin after a viability scan is standard practise so try not to let your mind go there

@indieray that is so disappointing, do you have any heparin left now that you will be able to take from your next positive test whilst you try to get it prescribed from a dr?
I really truly wish you the best of luck and pray that you get a positive test soon.

It is so frustrating, I had been asking before we even started ivf whether DHs DVT could be affecting the implantation (there is a lot of evidence this does affect it but it’s really rare). We were told no, we were just “unexplained”. It wasn’t until we had 2 failed rounds that I was allowed to pay for tests for me and they were positive (a bit of a surprise). This is the first time we have had heparin and it’s worked and it is for my issues not his. I do think back and wonder if all the slightly late periods over the past 5 years have been implantation failure, but I try not to because it would just eat me up. There needs to be more knowledge on this, DH was on the vulnerable list for covid and got extra jabs so it is possible but at no point have we been told that it’s unlikely we will get pregnant without heparin!

@indieray I’m so sorry. Some doctors do this and I don’t know why. My first two pregnancies failed before 6 weeks and from diagnosis the plan was that I would start 150mg aspirin immediately, forever (timing is important, in case they haven’t said it should be taken at night or with your evening meal) and then be on lmwh from a positive test. It’s no consolation that they are doing it now. Xxx

I’m taking aspirin in the morning with breakfast and heparin in the evenings, no one has specifically said what time to take them.

I spoke to the clinic this morning and I was told I should be referred to dr shillito by either them or the midwife for monitoring. I haven’t called the gp surgery yet to book in with midwife because you wait on hold for so long! But I feel a lot more confident that I know what I should be doing.

@NorthernDuckling that’s good news, you will be in good hands. Aspirin is most effective when taken at night - they don’t know exactly why but medical thinking is it’s something to do with natural hormone release and platelet generation which happens in the early hours of the morning. It’s good that they’ve referred you to be monitored - all the best for the rest of your pregnancy 😊

Morning all sorry to be a Debbie downer I just wanted to ask a question.
How do I get referred to a haematologist??
The miscarriage clinic gave me wrong advice and unfortunately I miscarried again they aren't that good and I've made a official complaint.
In my next pregnancy I've been advised I need to see a haematologist before I get pregnancy again. Can I self refer or do I have to go through my gps? Thanks everyone and wishing you all the luck in your pregnancy xx

@indieray this is an area of my expertise. 🤣 If you want to do it on the nhs then you need to go through the gp. It could take yonks though. For reference, I was referred to immunology in March 2022 and still not had the appointment through (although the APS tests through the fertility clinic may have discovered what the problem is).
If you are prepared to go private (first consultation is usually c£250) then you look up online and call the secretary to book in. Often, if you need more treatment they will refer you to their lists on NHS. I did this with dermatology a couple of years ago, I paid £250 for consultation but I needed a biopsy so I was referred to nhs and had it done about 2 months later. Often the wait is the initial consultation. The only reason why I didn’t do this with immunology is because they don’t have any private immunologists in any hospitals anywhere near us. There is one in liverpool and obviously lots London.
Fertility is the same, I’m nhs so waited about 18 months but a lot of people pay
for private tests which speed it up, then get referred to that clinics nhs list (if eligible), we weren’t in any rush as naively thought it would work naturally whilst waiting.
if you can’t find a haematologist online look at private hospitals like spire, bupa, or if you know a private doctor ask them, because they know a lot of the doctors in the private hospitals and will recommend- this is how I got my dermatologist and found out there were no immunologists.

I was referred to haematology after having my son in September 2020. It was requested by the doctor who performed my caesarean while I was still in hospital. I didn’t hear anything back though and when I went to the GP for my post birth check up they couldn’t see any referral on the system so they made one for me too. I had my blood tested and my first phone call with a haematologist (as we were still in lockdown) in early November so pretty quickly. I’m seen outside of Leeds for this as I lived on the border of counties and my GP fell between 2 different Trusts.

My haematologist is lovely but if I’m honest APS isn’t her specialist area. She doesn’t advise on the obstetric side of it at all (referred me back to my clinic) although agreed that lovenox from a positive pregnancy test, and aspirin outside of pregnancy was the standard treatment for someone with my history. It’s not unusual that I ask something and she doesn’t know the answer. There are no APS specialists in that hospital, however she does always go away and ask advice from specialists at other hospitals where needed.

What she does is test my antibody levels every 6 months and check my liver function and enzymes, then offer advice based on that. We had a weird situation where I tested negative for a year, so she got advice from an APS specialist elsewhere, who advised I would most likely test positive again and to continue the low dose aspirin I take anyway - and I did test positive again.

Blood tests are all on hold and will resume mid September, so about 10 weeks from the end of my current pregnancy. As I mentioned I’ve moved so it’s whether I continue to see her - about an hour drive away- I need to explore what the process is in my current Trust as it really does seem to vary massively.

Thanks so much everyone xx

Hey OP just came across this thread. I'm really sorry you have miscarried again.

I just wanted to add, I was advised to start heparin as soon as positive test which was around 4w5 days. I was already on aspirin like you. That pregnancy was successful.

I did though spend time with a consultant literally ready the textbook of treatment recommendations to make sure we were clear. I appreciate they have a lot of conditions to cover but basic things are often missed.

Make sure your GP is fully aware and fully onboard as they can advocate for you with consultants as well.

I hope you recover well.

@YoBeaches good point about the gp. Antiphospholipid UK have a free e-learning for GPs, it counts toward their CPD. My last GP did it when I was diagnosed - I’ll ask my new one to do it too.

Is anyone else really badly bruising from the heparin? I went to the chemist today for some advice because I’m running out of unbruised space below my tummy button.
I’m quite slim so don’t have much fat to inject into, the chemist said if it hurts it means I’ve hit a muscle and to pull it out a bit, and it will also bruise if it goes into a muscle - it really hurts about 80% of the time (guess DH just hits muscle). I swear it felt like my DH put it into my intestines yesterday, my eyes were watering, it felt like it was going into an air gap inside - really weird sensation, it was burning for about 10 minutes.