Anyone know about AntiPhospholipid Syndrome?

[digitalgirl]

Those of you who have been diagnosed with this? Do you also have the other symptoms (other than recurrent miscarriages)? Just read Lesley Regan's book and she mentions that you women with APA usually suffer from migraines, mouth ulcers, rashes etc.

The reason I'm asking is that I don't suffer from any of those symptoms so am wondering how likely it is that I will be diagnosed with it.

I have just had my third miscarriage so have been referred for tests for clotting (apa, lupus and one other) and karyotyping. I have one healthy ds (2.2) who was born at 36+5 but was a healthy weight (7lbs). I didn't have any trouble conceiving him.

I have to wait till I've had two periods before going for the tests. My cycles are quite long and so I'm expecting not to be able to test till mid-feb. Then I have to wait 10 weeks for the results. So a 6 month wait to find out if I test positive for either problem.

Am wondering what are the chances of me having a clotting disorder that would require heparin injections. They've ruled out hormonal problems and physical problems so it's either clotting, chromosomes or very very bad luck. They say clotting is found in 25% of recurrent miscarriage cases. So it's more likely that than chromosomes (found in 5%). Could I have developed a clotting disorder since my pregnancy with DS?

What are the stats for unexplained recurrent mc's? Is that more likely to be the case?

Basically am wondering whether to keep trying and take junior aspirin in case I get pg before I get a chance to test or get the result from the test. It took 4 cycles (6 months) to conceive after my last mc, so it's likely all this questioning is pointless. But I just don't know if I could bear to wait another 6 months without trying.

Not sure about other symptoms but I am currently waiting second test results after showing borderline apd. The dr was fairly clear you could have no other symptoms ( sympathies as have had 3 mc )

thanks ladies.

This has helped me make a decision to stop ttc while we wait for these tests.
I've heard that if you do test positive for clotting that they then need to repeat the tests after 8 weeks? Is this right, or can they make a diagnosis on the first test?

lunatic can you tell me how long it took them to diagnose your clotting problem? What dosage of aspirin are you taking and are you having clexane/heparin as well for this pregnancy?

Digital they do like to wait at least 8 weeks and yes they do retest (that is what I am waiting for) - in fact will retest again if this comes back negative just to be sure. Am also waiting to ttc as progesterone and aspirin also been suggested but need to be clear on clotting diagnosis first. Out of interest (and if not tmi) when were your mc - mine were all at about 6. -7 week stage and find it odd that all seemed to fail at some time.

Also interested to hear how long it took to diagnose you.

hardandsleazy I think my MCs were all between 6 and 7 weeks, but pregnancy not developing beyond 6+3 in size. I have one very healthy DS so I really thought the first two MCs were bad luck. Even saw a heartbeat in the last one, just never got going strong enough. Do you have any DC?

I haven't been tested for clotting yet. I mc'ed last weekend and they said to wait till I've had two periods before doing the blood test. A lot of other women on here seem to have had bloods taken straightaway after their mc...am wondering if maybe this cuts out any ambiguity waiting for two cycles. I suppose I should phone and ask.
I've had hormone tests between my last two mcs which came back fine. They've also scanned me quite thoroughly during my mcs which hasn't shown up any physical issues. So the only tests left are clotting (have three blood tests booked: APA, Lupus and one other I can't remember) and chromosome. Going to go for the karyotyping tests this Thursday with DH.

Are you saying that if you weren't borderline APD when they tested first time that they wouldn't have tested again? Did you have to wait two cycle post-MC before getting the first clotting tests done?

Hmm lunatic you may have answered something I've been wondering.

So you had a normal time with DC1 then lost DD2 very late?

See I had a fine pg with DD but MCed DS2 at 18 weeks and noone knows why. They did tests on me at the time but my notes are lost. Apparently they can tell if there are immune/placenta issues by the PaPP taken at 12 weeks but as I said, my notes are lost.

I've been wondering if it's possible to have a fine pg then get it and have losses. And also if it can be a cause of second trimester loss - seems generally to be a cause of repeat 2st tri losses but I have been suspicious.

Hi I was diagnosed with this (LA) after 2 tests after loosing DD at 20 weeks. I had also had 4 other losses, 6, 11, 23 weeks (but this was due to a chromosome problem at 23 weeks). I was started on aspirin at BFP and then Clexane injections at 7 weeks. It turned out that i also had an incompetent cervix which I needed an emergency stitch for at 21 weeks. They said there is no way of knowing which it was for sure which caused my losses, could be a mix of the two. I also had an infection..! I do have severe migraines and 2 other immune disorders both of which can cause miscarriage. BUT I did end up having 5 healthy children from 4 pregnancies so there is hope. I read alot of studies etc and with treatment there is a 70-85% chance of a live birth WITH treatment (aspirin and heparin) so it is not hopeless. Even with all my conditions, half the time I was OK.

I don't think i would take junior aspirin while ttc, it will be fine when get a BFP. Loads of luck x

Oh I haven't given up by any means - just trying to get all options covered for when I start IVF in New Year. I have bad hormonal migraines - really bad in first tri too. The cons said probably not IC but I will be monitored for that and also for UTI as I had one of those too. I was on aspirin til 12 weeks as it was IVF and they suggest it but maybe should have been on the whole way through. But also DS 2 had a chromosomal abnormality which they say didn't cause it but I think just might have. I had to terminate DS1 at 17 weeks due to a totally different fatal heart condition.

I just think that if I have to give birth to another dead baby it will finish me off.

Can you get bloods done at GP? I've def had them done at the time...

I suppose im lucky that I've not had to wait for a referral as they do these tests at my local hospital (Whittington). Epu nurse said that they're exactly the same tests as they do at st mary's.

So am I right in thinking that with clotting tests they have to do the actual tests after taking bloods immediately? Then they only re-test if you're positive?

peanuthead good luck with ivf in the new year.

jellybean so so lovely to hear you have all your children now. Were your mc's recurrent until you were diagnosed? Or did you have successful pregnancies in between?

I too appear to be quite lucky as the APS Charity and all things that are connected is based at St THomas's Hospital in London where I was diagnosed with 'Hughes Syndrome'- after Prof. Graham Hughes who found the disorder - there is a great charity called The Hughes Syndrome Foundation which is run by a lovely lady called Kate who would be able to send you lots of information or google the website. I was diagnosed with APS in my early 20's and was told that I couldn't have children (not connected to the Hughes Syndrome) and found out last week that I'm in fact 6 weeks pregnant so now nervous and excited but reassured that i will be monitored throughout taking clexane(Heparin) injections twice a day as well as aspirin in the hope that it doesn't end in m/c.

Hi digitalgirl (and others!) as you know I've been doing a bit research about the clotting stuff because of my Factor V Leiden thing. I found this chapter in a book online, it's primarily a review of the Factor V Leiden but there's a lot of information buried there and if you're willing to wade through it can get some good details, the best parts are the Clinical description and the Management sections:

Link here

It's long and I've printed it out to thwack my consultant with send to him in a reply to his letter where he says my heterozygous Leiden Factor V wouldn't benefit from treating. Given I'm currently running at a 25% live birth rate I'm going to at least ask him to justify again why a more proactive approach shouldn't be taken.

Thank you. I had successful pregnancies in between my losses. I had in order.

M/C
DD1
DD2
M/C
DS1 & DS2 (twins)
M/C
M/C
DS3

I was told that the antibodies can come and go. They tested me with DS3 and they were neg for LA whereas they were positive on both tests after my loss. They said they can be inaccurate in pregnancy. It's all so confusing!

jellybeans that's interesting about the on-off thing. Did you receive any treatment for the anti-bodies during any of your pregnancies.

ladybee haven't read the link yet, will wait for a positive diagnosis before I absorb any more information.

Jellybeans that is interesting as my second test results came back negative- have recommended further test in Jan and no heparin/aspirin although no reason not to ttc. Not a shock given what you and others say about levels going up and down but given I am nit going to try indefinitely I am a bit on the no treatment option - not even aspirin. Seeing consultant next week so will ask

I have only had two pregnancies since they diagnosed me with it. One i started junior aspirin at bfp but M/C about 7 weeks. Next one i started asprin at BFP and Clexane injections at 7 weeks (after scan showed heartbeat) and carried on injecting till a couple of days before my c section. Ended aspirin at 36 weeks.