Anti phospholipid syndrome in pregnancy

[tsw]

Just wanted to see if anyone has this or is suspected of having it?

I am currently 8+2 with my second pregnancy. I lost my baby in my first pregnancy at 38 weeks with what is believed to be APS (2 positive tests, one at 27 weeks & second at 38 weeks). I haven't had a + test since for it but have higher than normal platelets.

I was due to be diagnosed last month with APS due to 2 tests positive & "an event in pregnancy". But 3 neg tests are throwing this into disrepute. I am on 150mg of aspirin & was wanting heparin daily but not been given that due to my negative tests in & out of pregnancy this time. My consultant is playing it by ear & I have another test at 12 weeks.

Doesn't help that last consultant said placenta was malformed & was inevitable but new consultant says no it died in 3rd trimester hence late loss.

New consultant is a regional expert on stillbirth & placentas but seems very lost by my negative tests.

Any one else with APS? Anyone else have inconsistent results?

Oh no, so sorry for your loss.

I have had thee MCs, two of which were mmcs. There was talk of this being the cause, and I was told to take aspirin throughout my pregnancy. I have had two successful pregnancies now, although one of the miscarriages happened whilst on the aspirin, so I'm not sure.

It is also called Hughes syndrome. And Dr, Hughes sees patients. Have you considered contacting his office to see if you could have a consultation with him?
www.hughes-syndrome.org/

I'm afraid you need to press very hard for what you want. Doctors can be surprisingly dismissive of the condition and of the losses.

It must be a very worrying time for you.

I know too well how dismissive they can be. None of the midwives & barely any doctors were aware of APS in my last hospital & contributed to my loss.

My current doctor says he would be "happy" with the course of action if I had a positive test in pregnancy but he thinks if it is transcient & never appears that heparin could cause a devastating abruption & wants to wait.

I feel very much like a guinea pig at the moment but he seems to be as knowledgeable as possible on the topic & takes research I find to read.

Oh, that's still a bit rubbish though.

Try Dr. Hughes...got to be worth a shot?

Hi

I'm very sorry for your loss - that must have been the most dreadful thing to have to go through.

I was initially diagnosed with APS after three early miscarriages and two positive blood tests and told that I would need to go on clexane and 75mg aspirin in any future pregnancy.

I'm currently pregnant and when I went to consultations found that there seemed to be some disagreement between the various doctors about whether my particular circumstances met the criteria for a diagnosis of Antiphospholipid syndrome or whether I merely had antiphospholipid antibodies. I had one Dr saying I didn't need to be on clexane at all and another saying that I should be treated as though I had the syndrome and should be on it. As part of the discussions they did a further blood test for Antiphospholipid antibodies which came up negative, just to add to the confusion.

In the end, because by that time I was already on clexane and unwilling to come off it unless anyone could say that it would be harmful, we agreed that I would stay on it until after the 20 week scan. At that stage they were able to measure blood flow through the placenta and to checking the placenta's development to see if there were any problematic signs. That scan showed that all seemed to be fine, and the advice was that there was no particular benefit from staying on clexane so I have stopped that but am continuing with the aspirin.

Do you want to be on heparin? I can imagine that you may well do given your previous experience. I'm in my 40s and had some quite firm and direct discussions with the Drs about the fact that this may be the only chance that I have to have a child and that I did not want to give up clexane unless the risks of taking it outweighed any possible benefits. Is there scope for arguing for an approach that see you being treated with heparin up until your 20 week scan - i.e. until they have had a good look at the placenta and established that there are no problems?

I was told heparin/clexane does not cross the placenta and any risks are to you not the baby. After a late loss and two 'medium' blood tests (I.e. positive but not high results) I had clexane once a day and aspirin once a day in a subsequent pregnancy. If they do not think you have a clotting problem, why are you on aspirin? .

If I were you, I would assertively request clexane. At least then you know in yourself that you have tried everything for this baby (I do not mean this in a horrible and scary way - I hope you will know what I mean from your previous loss).

Do you have the actual PM report from your previous baby? I have from mine and although it is horrible reading it is useful to wave at subsequent doctors - they read the stuff about the placenta straight away and then stop arguing (something about decidual vasculopathy??).

I wouldn't stop clexane at a positive 20 week scan either - clots can form quickly & invisibly at any stage. You might also want to request a doppler scan of placental function at I think 20 and 24 weeks, this is a good test of placental function.

Btw I never had a blood test during pregnancy. As others mention, might be worth a phone call to the Hughes Syndrome Foundation.

Sorry to sound scary and again I am just talking about my experience, but my late loss occurred whilst just on aspirin. I know other people with suspected clotting problems do have successful pregnancies just on aspirin though.

Also something which I and others were prescribed is high dose folic acid - don't know why.

I'm not sure how I feel about heparin at the moment as the thought of an abruption does scare me...

I will be having a placenta scan at 23+6 & growth scans & doppler scans all the way through to the end.

I'm on aspirin because my platelets are in the 500 count region (should be down below 400). Not high but not normal. APS comes with low platelet counts so I seem to have something going on but what...

My consultant has all of my notes from my last pregnancy & has read all the PM & the placenta findings.

I know what you mean about doing all you can do x

I'm keen to see what happens in my latest test. I'm more confident than I was when I was told it was malformed at 12 weeks by my last consultant now that it has been explained it was not malformed & was dying early for some reason.

It's reassuring that I am not alone in getting neg tests in second pregnancy, though!

noteveryday were you having regular growth scans in the pregnancy with your loss (I am so so sorry btw, know exactly how devastating it is!). I had no scan prior to finding out I had lost my baby aside from standard 12w & 20w.

Hello ladies I am new to the site.
Sorry first of all for any losses that anyone has had to go through.
My fiancé and myself have now had two misscarriges and after blood tests found out my APS was very high I was 13 and a normal should be 0-6 blood clots. I am a healthy 32 year old a little over weight but not that much. I was told that I would be going on a blood thinner to get pregnant but now they are telling me to just get pregnant naturally and to keep up a healthy lifestyle and all that which we have and nearly two years now and nothing ? I am taking 150g asprin as I wanted to thin my blood if the doctors were not going to help me I had to do something for my own piece of mind.
Does anyone know what else I can do to help with the high blood clots to reduce them ?
Thanks
Christina