APS just during pregnancy?

[rebeccajaney]

Hi, I'm looking for some advice please! I have two questions...

Is it possible to have antiphospholipid antibodies purely during pregnancy?

Would the fact that I wasn't prescribed any medication after my son was born indicate that I don't have APS, or are there people who have APS who don't have to take medication?

A bit of background.....I had pre-eclampsia and then eclampsia in my first pregnancy 20 years ago, so when I had my second child I was under a consultant. Blood tests were done and they found I had antiphospholipid antibodies. APS/Hughes Syndrome was mentioned to me, and I had to inject myself with Fragmin for the rest of the pregnancy and throughout my last pregnancy too. What I'm trying to find out is if it's possible to just have the antibodies present just during pregnancy or not? I know diagnosis is dependent on 2 positive blood tests in addition to clinical indications (ie eclampsia), but I don't recall having a second blood test (although it's possible I had it but just don't remember!). I was never told I needed to take aspirin or any other medication after my last pregnancy, which made me assume that I didn't actually have APS after all. I realise this sounds a bit muddled, but I'm struggling to get an appointment with my GP to discuss this, and I've been asked to book my second COVID vaccination, which will be the AstraZeneca version so I'm a little concerned about increased risk of clots if I do actually have a diagnosis of APS.

Thanks in advance for any advice!

[GinaD]

Are you now or have you earlier,experienced any APS symptoms while not pregnant?

[KellyInTexas Administrator]

Where did my reply to you go from two days ago?!

Gremlins...

So sorry.

It basically said that many women find they have APS symptoms creep in after their children ( hopefully they are lucky enough to have carried to survival) are school aged.

These women will fall somewhere on the “APS spectrum.”

Some will need aspirin, some will need anticoagulants, some will need anticoagulants and an anti platelet combo, some will need all this plus suppression of some kind, not simply immune modulation like plaquinil.

Again- not at all uncommon. Obstetric APS simply means it’s occurring during pregnancy. It does not and should no longer exclude women from being considered APS positive during a non pregnancy state. Your titers might go negative briefly, but it does not mean you should not be diligent in keeping an eye on them and symptoms.

Many women become pregnant and do not develop Obstetric APS, so there are clues that your body is different to other women.

My mother almost died from preeclampsia delivering my twin sisters( 18 years my senior.) she continued with clotting complications/ DVT’s/ PE’s for the rest of her life. After I was born in 1969 she had another DVT. Again when I was 6. Again when I was 12, and so on.

Hughes syndrome was not yet discovered.

I lost her when I was in my mid 20’s to this wretched disease.

Please stay diligent.

[HollyHeski Administrator]

Yes there is a school of thought that you can just have APS during pregnancy, which is why the heparin is stopped 6-8 weeks after birth.I think you are right to show concern, as many of us go on to develop clots later. In my case 10 years after my 1st child.

Please persevere with your GP and get the APS tests done, be aware these can still come back negative. Do you have any symptoms re headaches etc? Discuss all this with your GP, they are the best personal advisors on this.

Re the 2nd dose of Astra Zeneca- I would still go ahead, the risks of clots is minimal especially compared against clots in Covid.

[Mimi1900]

I was tested for Lupus and anticardiolipins before my last pregnancy for a variety of reasons and was negative for Lupus but positive for anticardiolipins- saw a high risk pregnancy doctor, told to take a baby aspirin and go for weekly fetal scans after 28 weeks (this was 29 years ago) I had pre eclampsia and was induced at 37 weeks. 9 years later I was diagnosed with Lupus and rheumatologist asked didn’t anyone tell me to follow up and keep taking baby aspirin and I said no. I am positive for anticardiolipins and take a baby aspirin in addition to other medicines for Lupus.

[Mimi1900 in reply to Mimi1900]

I just had my second Phizer shot two days ago. I did develop a Lupus flare within a week of the first Phizer shot and did have to begin taking a low dose of prednisone in order to be functional. Symptoms were primarily muscle and joint pain with some swelling.

[slowcyclist]

Your post sounds like where I am sitting. I had definitely APS during pregnancy, preeclampsia with my first child ( he’s 28) multiple miscarriages and babies who didn’t grow in the womb after 31 weeks. In later years I was told I didn’t have APS any more because it no longer showed up in the blood tests. My grandmother’s sister died of eclampsia. I still mention APS whenever I have any procedures and assume it could be there no matter what the doctors say, after past experience I am not taking any risks. I have not been advised to take any aspirin or anticoagulants though and to be honest I don’t but it’s always in the back of my mind. I have had COVID and both Pfizer jabs, it’s always a worry but I am still okay.