Experience with Anti phospholipids syndrome and a pregnancy over 40

[CarpeDiem75]

Hi
I am a bit upset at the minute as after 3 miscarriages I was discovered the antiphospholipids syndrome. Now after talking to my family doctor he has really advised that now I am over 40 getting pregnant is a really bad idea because of this immune disease and I will be really high risk.
If anybody could share their experience in that age range with the same condition would be amazing. Thank you!!

Would recommend reading the info on this site and seeing if you can get referred to gynae/obs/fertility specialist or go private if you can.

Depending on your hospital, they might be aware of APS when you reach out to them pregnant and prescribe what you need, but it is best to get checked out and know what meds you need before you get pregnant, so it isn't a worry whilst pregnant. I.e you don't want to be running around worrying whether or not you have the right meds or finding someone to prescribe in 1st trimester.

They will likely have you as a high risk pregnancy and you may have to take blood thinners orally/injections to prevent clots. Each person has a slightly different medication dosage depending on your antibody levels/other circumstances.

https://aps-support.org.uk/

Thank you the NHS didn't seem to bother about it and put me on aspirin and I have a prescription for heparin when I get pregnant but they never took my age into consideration so I start to get freaked out a bit...I have looked at the APS website and trying to get an appointment with an haematologist.
Do you have APS yourself?

Anybody else ? Thanks!

Hello, just received diagnosis of APS today. Already have 1 DS (4.5) & been TTC for 3 years & am now 41 (42 in May). Feeling a bit overwhelmed so joining this thread to hear advice

@CarpeDiem75 have found a couple of support groups on Facebook that may be useful to join as advice seems to be pretty limited on here atm!

@Angloitalian83 thank you! Unfortunately I had two more miscarriages after that diagnosis last year and with heparin and aspirin. Went to see a hematlogist in private and she confirmed that I didn't have APS so I am exploring immune system issues instead as it sounds more like it! Just to say if it doesn't work don't give up it seems the nhs just want to put an answer to your issues without pushing too far the testing!!

Hey
I was diagnosed yest
38.5 , 6 wks preg
History of loss

Eek

Your doctor is questionable 🤨 he’s a GP not a specialist and to be honest he’s full of shit.
I had two miscarriages and then was diagnosed with APS at the age of 41
my consultant said when I fall pregnant again to start on heparin and asprin which I did.
i am now 35 weeks with a little girl and absolutely fine

APS is tested using three tests, each repeated three months apart. I'd question how you can have it and then not have it considering the tests aren't accurate enough for a negative to be considered proof. Typically you would continue testing and see if you get another positive. Hughes (APS is called Hughes's syndrome too) once said the lupus test will only turn positive depending on the direction on the wind. I'm paraphrasing but it's not a reliable test to rule out APS so ensure they're doing all three blood tests not just one or two.

Your family doctor isnt an expert. They're under informed. Its important they get the diagnosis right. Only 10% of untreated pregnancies will be successful with APS. That's 70% with hepraine and aspirin. Check out video with Hannah Cohen discussing pregnancy with APS, she pioneered the treatment. I'd pay for another private blood test if they're refusing to do more.

hi I realised I have not posted on here for a while, I was wondering if any of you have used NIPT testing? I have read that the use of heparin/aspirin can affect the results so I was curious to get some feedback on how you got around with this and which test did you use in the end! Thanks 😊

Congrats

Im 24w with little girl

Been on blood thinners and aspirin