What readings did anyone else get for APS?

[Sunshine39]

I got 17 and 18 retrospectively for cardiolipin. I think this is low tier - I believe 0-10 is normal. I realise there are different tests done for APS so it is not standardised. Can't seem to be able to locate any information on how my level of APS (although I realise it can vary) impacts upon health/pregnancy? Maybe the research is still inconclusive.

Hope everyone has a Happy Easter x

[Hopingforababy]

Hello! I tested repeat negative for anti cardiolipin but positive for the Lupus Antibody - another sticky antibody (I don't have lupus it was just called that as sometimes found in people with lupus) but because of my obstetric record I was diagnosed with primary APS. I've had no other symptoms apart from still birth and miscarriages. Maybe I will in future - who knows! But I'm on low dose aspirin and heparin injections and 27 weeks pregnant - all going well so far. I don't think levels have a huge amount to do with it as some people test negative for all the antibodies but still have APS. I read somewhere that the Lupus antibody is more associated with pregnancy loss. But that could just be speculative. I know the specialist I saw said it affects conception but I don't know about the anti cardiolipin. My god mother has protein S deficiency (an inherited condition caused sticky blood) and was out on heparin for IVF and was successful. Best wishes x

[Sunshine39 in reply to Hopingforababy]

Hi

Could I ask also, when you have been asked to continue heparin until? I have been told 34 weeks to prepare me for the birth but I have a feeling this is way too early and someone else on here said they took it up until the day before the birth. Sorry about so many questions. I find this forum such an excellent form of support.

Hazel x

[Sunshine39]

Hey Hopingforababy

Really nice to hear from you. Great to hear your pregnancy is going well. Where you diagnosed with APS recently? Don't seem to be able to find any literature on the levels. You are in good hands with the meds you are on and I believe heparin gives between a 80-90% successful pregnancy rate. Could I ask the dosage of heparin you are on as another poster on here suggested that it is weight dependent - the dosage? I'm 9stone and on 0.45iu shots each day. Not sure if I have been given the correct dosage but hope so. Have been asked to start aspirin upon a positive pregnancy test too. Feel in fairly safe hands with the drugs that I am on but struggling getting my GP to refer me to a specialist which is rubbish.

That's great news about your godmother too. Sounds like it really is a miracle drug.

Thank you for your help and here's to the healthy birth of your beautiful baby.

Hazel x

[Hopingforababy]

No problem about the questions - ask away! I've been told heparin until 24 hours before delivery as being induced at 37 weeks. I've been told that heparin alone doesn't do it all as it doesn't cross the placenta. Aspirin does cross the placenta and it's the placenta that can clot- as it did with me which caused the loss of identical twins at 30 weeks. The heparin as far as I know from speaking to various consultants and reading up on it helps a successful conception as improves blood flow to the uterus and it protects the mother mostly in pregnancy. The aspirin low dose helps the placenta directly. Of course having thinner blood due to the heparin will also help the placenta but more indirectly. Hope that makes sense! I've been told to stop aspirin two weeks before delivery as it has a longer half life of 2 weeks instead of 24 hours like heparin. Hope that helps. I'm on a higher dose of heparin as a bit overweight- sounds like you have the right dose. I was diagnosed last year after the pregnancy losses so I paid to see a specialist at St.Marys recurrent miscarriage clinic. Best advice I could get! X

[Sunshine39]

Hi there

Sooo very sorry to hear of the loss of your twins. Hugs.

Thank you so much for the information, that really makes sense and helps me a lot. Can't for the life of me think why they say 34 weeks for me for the heparin and getting an answer is like blood from a stone. Even if they say stop the aspirin, I won't until 2 weeks before.

Wishing you a happy, healthy pregnancy.

xx

[Hidden]

Hi I was diagnosed after losing my son at 22weeks. With 2nd pregnancy I took asprin and son was born at 29 weeks ( now healthy 15 year old) with 3rd pregnancy I took asprin and heparin ( sorry can't remember dose) I was induced at 39 weeks and was told to stop both 24 hours before then start then again after son was born for 6 weeks. Hope this is some help and good luck to both of you xx

[Sunshine39 in reply to Hidden]

Thanks Lewchar1, sorry to hear of your loss. Everyone I have spoken to has had successful pregnancies with heparin which gives me much hope. It's good to hear success stories so please keep them coming everyone. I'm sure my clinic have got it wrong then saying stop at 34 weeks as everyone else takes it up to 24 hours before giving birth. With the experience with my dr at the moment (not listening to me), I really think I must change drs.

[ksal]

Hi,

I was diagnosed after 3 miscarriages and had anticardiolipin antibodies, I can't remember the levels. I was induced at 35 weeks and 37 weeks following complications and both times continued clexane and aspirin till near the birth and again afterwards. I now have a very healthy 10 and 8 year old! Best wishes x

[Sunshine39 in reply to ksal]

Hi

Thanks Ksal. So the treatment worked well - happy days. Think it is simply a matter of money why they won't prescribe it to me any longer than 34 weeks. I read, in a reliable source, that the pregnancy will be fully viable by 31 weeks and that's why it is stopped by some doctors at this stage. Will still ask for it for longer. If they refuse, I might just say they accidentally got damaged and so I need a new prescription. Nothing they can do then. Ha.

[Salty]

Sunshine, I would definitely find a doctor who prescribes you heparin and aspirin up until right before birth. You also of course absolutely deserve to have a physician who listens to you and answers all of your questions!

If you look at all patients as a whole, in general it is felt that the higher the titer and the more positive tests you have, the higher your clotting risk, but patients with very low titer as well as seronegative patients can also have very severe disease.