Sticky Blood-Hughes Syndrome Support
8,331 members8,510 posts

Aps and pregnancy. Please help!

Hi everyone, I tested positive for LA a few months back. Still haven't had my second test to confirm. This morning I've just had a faint positive on a pregnancy test. The Dr put me on 75mg of aspirin a day about a month ago. I have an appointment on Tuesday morning, what sort of things should I be asking for, as I'm not sure the aspirin will be enough. I've read about clexane, is this something my gp could provide? I've had 3 miscarriages and was referred to a specialist who sent me away and said I'm still young (27) go away and come back if you aren't pregnant in 6 months. So no help really. Wondering if anyone has any experience with this?

Thanks 😊

19 Replies
oldestnewest

The standard treatment seems to be aspirin and LMWH once pregnancy has been confirmed. I’d make sure you are under a specialist pregnancy unit and a Dr with APS knowledge. Your other Dr does not sound as if he’s the right person for either you or your peace of mind!

2 likes
Reply

Hi thank you for your reply, I've made a lis to stuff I'm going to ask the Dr I will also ask to referred to a specialist straight away. I need to do something I can just keep going on getting pregnant and having miscarriages without any help. Thank you 😊

Reply

Take a baby aspirin 81mg daily. That's what my specialist did after two miscarriages. I've had three healthy happy babies.

Heather from Ohio

Reply

Aloha from Hawaii!

I had one stillbirth, because I was not properly diagnosed and treated.

I suggest getting a second opinion and requestung a special protocol for you from thus point forward.

Yes, a specialist should be involved.

At least aspirin and LMW heparin should be considered.

2 likes
Reply

Hi thank you for your reply. I'm going to ask to be referred asap. I feel like I need to be on more than just aspirin so will definitely be asking about the heparin injections. Thank you for your help 😊

Reply

Congratulations.

Personally I needed 150mg aspirin and 5000 units of fragmin (type of heparin which is what Celaxane is) to carry my girl to term. I was only prescribed this from seeing a private specialist as all my four previous miscarriages were technically before 12 weeks so the NHS won’t prescribe fragmin.

If you don’t get the answers you need Tuesday ask your GP to write a referral for a specialist and pay to see one ASAP.

I saw Dr Raj Rai at St Mary’s in London who was amazing. I had a TEG test which proved I needed more anticogagulation. If you need more details let me know.

Good luck and let us know how you get on xx

Reply

Thank for you reply. We've had this appointment with the Dr for over a month the plan was to discuss what happens when I find out I'm pregnant. I'm really concerned that if I ask to be referred, that's it's going to be too late. How long did it take for you to get an appointment? I'm hoping with me already ready being pregnant they will advise to atleast up my dose of aspirin to 150mg. It's such a worrying time and I feel like I've had no help whatsoever xxx

1 like
Reply

You really need to know if you need 150mg as you also wouldn’t want to make your blood too thin as this can also cause miscarriage. I know it’s a catch 22 situation and an awful situation to be in you have my full empathy.

I would never have been referred to Raj Rai as I live too far away and didn’t meet the criteria is a second tri loss. I have two early miscarriages then a missed miscarriage at 14 weeks while on 75mg aspirin alone but as baby stopped at 10.5 weeks I didn’t qualify. Then another at 6 weeks before paying to get the TEG test. It was over Christmas which delayed it.

As I was paying I just took the earliest appointment and asked to be out on the cancellation list. I think it was about 8 weeks from initial contact to appointment.

Liverpool women’s also have a TEG machine but the wait at that time was much longer so I went to London.

Reply

Hey, I too have aps and am currently 21+4 weeks pregnant. I was on apixaban but was changed over to daltaparin (fragmin) at 7 weeks. I'm on 20,000 ul a day - two injections and 150mg junior aspirin. Im under a consultant obstetrician and the main haematologist at the hospital. I have my anti xa bloods done every four weeks, I start a two weekly growth scan schedule in June. All is going well. Bubba is very active. I also had three miscarriages before my rainbow baby came two years ago, this baby was a complete surprise.

Reply

That's amazing, congratulations on your rainbow ❤ I'm hoping if the Dr doesn't know anything about she will be able to refer me straight away. I'm worried it could be too late by the time I get to see them. I've never made it past 6.5 weeks. After I've spoke to the Dr tomorrow I may even just up my dose of aspirin to 150mg of my own accord xxx

Reply

Please be careful with the aspirin. It might not be safe in higher doses pregnancy. The lower dose seems to be okay, but the research demonstrates that with APS, aspirin alone doesn’t prevent miscarriage. The aspirin aids in conception. The combo of low dose aspirin and LWMH is really what keeps the pregnancy going, and the LWMH is unlikely to cross the placenta. Please see a specialist ASAP. If it were me I would even go to the ER right now to begin the injections. We really must advocate for ourselves and our little babies. Wishing you all the best, and envisioning a happy, healthy pregnancy and full term baby for you!

Reply

Aspirin alone worked for me. Two miscarriages then on to have three children once told by the specialist to take the baby aspirin.

1 like
Reply

That’s awesome! :-) I’m glad to know it was helpful for you! I am ttc, started baby aspirin several months ago after mc and APS dx, no luck yet. :(

Above I’m simply sharing the statistics from the research that’s been conducted thus far, and the guidelines for treatment here in the US. There are always outliers, and always limitations to the info derived from the literature, especially when there is such little research to begin with.

Again, so happy to hear you were successful with BA alone! What a blessing! Thanks for sharing your experience, it gives me hope. 💗

Reply

Hang in there you too will have a happy ending. Are you having trouble getting pregnant?

1 like
Reply

Yes. Been trying for almost 3 years, conceived only once about 9 months ago (due date would be next week 💔 ), saw baby’s hb albeit slow, then lost baby at 11 weeks.

Reply

Hiya hun, I've just found out I'm four weeks pregnant diagnosed after three misscarriage also, my Dr from the misscarriage team at the Liverpool woman's has started me on fragmin injections daily and 75 mg asprin also and I've been doing this for five days now. I've got a good feeling about this x I hope it all goes well for you and I would be asking for fragmin from now not 12 weeks but I'm not a dr but if it gives us the best chances xxxxxx

Reply

Good luck! I hope you have a very happy healthy pregnancy.

Reply

Thank you so much for your reply and congratulations! I just haven't had a very good level of care to be honest there has been no follow up at all. I will definitely be asking about it. Tomorrow seems like so far away! I'm worried I won't be referred in time and it will be too late. Wish us both lots of luck 🤞🌈 xxx

Reply

Hi, congrats, hoping you are ok, your GP needs to refer you to a specialist off our list, (right hand side of the forum under pinned posts), as clearly you and the GP will need expert management of this condition, being referred to a specialist is not the same as being referred to one of our recommended ones, please take a look and see. MaryF

Reply

You may also like...