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antiphospholipid syndrome and TTC/ pregnant

(5 Posts)
phlebas Sat 09-Feb-13 22:16:27

I have APLS - non pregnant my antibodies are borderline but the levels shoot up when I'm pregnant. I had an early miscarriage then a live birth (very complicated pregnancy) then three more miscarriages then I was diagnosed.

The next pregnancy I was treated with aspirin & clexane from the start but miscarried again (twins, one at 7 weeks the other at 14). The next pregnancy I saw a private obstetrician & they added prednisolone in for the first trimester (& clexane/aspirin until birth) - that time I had a lovely full term pregnancy smile

Next pregnancy I was back with the NHS & no prednisolone - I miscarried at 17 weeks sad After that loss I was transferred to the Silver Star unit at the JR in Oxford - they agreed to prescribe the prednisolone with clexane & aspirin & I had two more relatively uncomplicated pregnancies after that.

My advice is that you my need to be extremely assertive to get proper treatment - APS is too often badly managed.

Bodicea Sat 09-Feb-13 17:15:58

Sounds like everybodys tests are inconclusive! Hopefully my next results will be helpful. I think if the consultant recommends it will def do it.
KatandKit I have a little bit of tummy padding - always hated it but now maybe it will be an advantage for something grin
Glad to see a couple of success stories.
midori hopefully will be hot on your heels soon xxxx

KatAndKit Sat 09-Feb-13 15:58:47

I have APS which was discovered after 2 miscarriages. One of the results was only borderline but I got pregnant again before I had chance for a retest so they treated it as positive anyway. I had already self prescribed myself the low dose aspirin but I ended up getting prescribed than anyway although I am glad I had been taking it right from the start of the pregnancy.
By the time I saw the consultant I was 6 weeks and I got put straight on the clexane. I wasn't fond of the idea of stabbing myself in the stomach every day for 9 months (you have to do it for 6 weeks after the birth too) but I was ready to do whatever it took to have a healthy pregnancy. There isn't any alternative that doesn't involve injecting and to be honest, you get used to it quickly and the injections are not very painful especially if your stomach is reasonably "padded".

I did a bit of dr googling too and I did read somewhere that without treatment, a woman with APS has a 90% chance of losing the baby and this was all the motivation I needed to keep up with the treatment. Fortunately it worked and DS is napping in his pram smile

Of course, you could still miscarry on clexane, it can't do anything to prevent a miscarriage if there is something wrong genetically with the embryo and that could happen to anyone. What it does do is put you back to the same risk level as other women - so a 25% chance of miscarriage rather than 90%.

Midori1999 Sat 09-Feb-13 15:47:58

I have APS. I have seen two different haematologists, who both say different things, but I had the first tests under one haematologist, the first was positive, the second was borderline, with the second haematologist, who did the tests because she didn't have my results from before, definitely both positive and apparently she did a d-dimer test too, which suggests I'm at high risk of clotting, so after this baby I will be on warfarin for life.

Before I was diagnosed I had three healthy pregnancies to term, then one early miscarriage of twins, then lost twins after they were born at 24 weeks, as my waters went at 14 weeks, started testing for APS after I had bilateral pulmonary emboli at 21 weeks with my twins and was on clexane, then had an early miscarriage, got the diagnosis and then went on aspirin whilst TTC. I concieved first cycle once I was on aspirin and DD is now 19 months.

I concieved first cycle on aspirin again this time luckily and just started clexane. I am now 4 weeks 4 days and terrifed, but I know the chances of a good outcome are high once on the meds. I haven't had a miscarriage on aspirin and clexane, although it's obviously possible.

Bodicea Sat 09-Feb-13 15:11:19

Just wondering if anyone has experienced this - is TTC like me after MCs or if they are/ have been pregnant.
Or has anyone had inconclusive/ mixed results like me and what did they do about it?

After two miscarriages last year, the last one at 8 weeks gestation in December I decided to get a few blood tests - expecting it to come back normal. I got my first set of blood results back yesterday and the results took me by surprise. I tested borderline for antiphospholipid syndrome. The first test had come back positive and a second test more sensitive test came back negative!
Had a repeat test but midwife says they will probably put me on clexane when I get pregnant anyway whatever the results. Going on baby aspirin straight away. Mixed feelings about this. It was a bit of a shock. I am glad I tested after only two MCs instead of the recommended three. I wish the test had been more conclusive and I don't relish the idea of injecting myself in my stomach everyday but I am glad we have something we can do something proactive to stop this happening again. After reading up I have seen that it is more associated with later MCs so not even sure if it is anything to do with my two MC's.

I also tested high for fibrinogen levels and midwife isn't sure what that means but I know its to do with clotting too so I guess clexane can't hurt for that either. Need to do a bit more research

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