Cardiolipin Antibodies

[Curmon]

Hey everyone,

After trying to fall pregnant for what feels like forever (im sure that is how we all feel about it), I have just been diagnosed with moderate cardiolipin antibodies. I was tested twice about 6 weeks apart and both blood tests came back with the same result. I will begin daily clexane injections the day i have my next embryo transfer and if i do fall pregnant will continue on the injections throughout the pregnancy.

Just wondering if there is anyone out there who has the same condition can share there experience with me and also apart from the pregnancy thing whether the condition has had any other impact on their health or life in general.

Thanks
Claire

[AliB]

Hi Claire

It's actually good news that they have discovered this 'relatively early' ie after "only" 1 miscarriage (big hugs, so sorry to read about that).

What were your numbers for igg and igm (?? think that's what the names are, I must check my results)

I got a low positive for anticardiolipin antibodies on 2 consecutive tests. My FS and OB didn't want to do anything for a low positive, seems you need to be moderate or higher. I was told that low positive wasn't treated "unless you suffer from multiple miscarriages". This infuriated me as I hadn't even managed to get pregnant once, let alone multiple times and to imagine the heartbreak of one loss let alone multiple... gulp. But the good news for me is that IVF worked first time and I'm now 27 weeks and bub seems to be developing normally - no indication of clots.

My sister on the other hand tested positive to Lupus anticoagulant. It is very similar and has similar effects and treatment regime. She had 4 miscarriages - I think all were missed miscarriages - generally what happened is she had the scan at 12 weeks (or earlier a couple of times) and found that the foetus had not developed properly. Finally she got the diagnosis, and started on Heparin (like Clexane) and aspirin each day from the moment she might have next conceived. She soon got used to the daily injection although she did bruise very prettily (you'll know if you're a bruiser after your prior IVF experience) so her belly photos were marred by black and green spots!! She was also classed as a 'high risk' pregnancy, probably also a factor of her age (nearly 40) so had extra scans and appointments. The pregnancy went very smoothly and in June she gave birth at 37.5 weeks to gorgeous Zoe Rose! She developed pre-eclampsia at the end, I understand that there is a slightly higher risk of high blood pressure once you come off the injections, but hey that happens to lots of people.

HTH and good luck xo

[Curmon]

Thanks for replying.

My miscarriage was a missed one as well, no heart beat at the 12 week ultrasound. I have had about 10months of IUI with no success then moved on to IVF with around 10 transfers done with only the 1 pregnancy. So I was starting to wonder what was going on. It was just the FS doing routine bloods that the problem was picked up.

It funny talking about igg and igm as whilst i was waiting for the test results to come back I was studying the immune system at uni and alot of the subect was about all the ig's and there role in the body. They did tell me on the phone what the levels were but i cant remember as it was kind of a shock to hear that something is not quite right and that its affecting me falling pregnant. I am doing a IVF cycle now but a freeze all one as i have to have surgery on the 2nd dec and have to wait for pathology results to come back before embarking on baby making again. I will speak to the clinic about my levels when i next go in.

What i am trying to find out is what effect this will have on my body in general, not just trying to concieve and have a healthy, sucessful pregnancy. There is talk of taking asprin which is an anticoagulant, but are people doing that for pregnancy or just for their general wellbeing? The other thing is should i see a dr or specialist about this? I suppose these are the questions i will ask my clinic.

Congrats on the pregnancy and wishing that it all goes well for you.

Claire

[AliB]

Hiya Claire

10 transfers, oh how my heart goes out to you. When we started IVF I was mentally prepared for a long road like yours due to PCOS, endo, polyps, inflammation of uterus lining, and positive anticardios, so was utterly shocked when it worked first time. And also shocked each time I had a scan and it was confirmed that bub was still there and growing well. I do hope that you have that good shock very soon.

I would hope that your FS has enough experience in this area to get you started on the injections and answer your initial questions. It may well be that they suggest you see a specialist during the pregnancy. This would mean either going private and choosing an OB who is confident with managing a preg like yours; or if you're going public and they can't offer continuous specialist care during the preg you cold get a referral to a specialist who you could talk to about any additional monitoring.

Taking the aspirin is definitely for the preg, not for general health. Some oldies with borderline high blood pressure take a very low dose aspirin but otherwise it's not recommended on a daily basis for health reasons! Indeed, normally you are told to avoid aspirin if you are preg so it's not something to take completely lightly. I asked my FS if I could/should take aspirin 'just in case' as she wouldn't support clexane in my case - she said no there was no evidence that it did much on its own.

Aspirin is used to compliment clexane / heparin therapy due to its anticoagulant properties. I believe the issue is that it thins the blood so if you develop a problem with bleeding during the preg, or have an accident and need emergency surgery, you could bleed a lot more as your blood won't clot. Because of the bleeding risk you need to stop the meds at about 34 weeks so that if you did go into labour early it is out of your system.

I believe there are not any significant concerns about affect on bub or long term effect on your body for the 7 months or so that you'll use it. Some people take it for life, in which case there is more concern about impact on vitamin levels in the body (esp loss of calcium). My FS suggested that it is the bleeding risk (not to mention costs, inconvenience/discomfort and need to balance risk vs benefit of ay treatment) that means they don't prescribe it to low level patients but rather 'wait and see'.

Hope my rambling helped some more!

[Curmon]

Thanks again for replying.

Well I am due for my first blood test tomorrow and will start FSH on Fri. So i will have a good chat to the nurses at the clinic and if i have any concerns they will get the FS for me. Because I have been seeing them for about 4 years, they all know me really well and sometimes go out of there way for me, which is nice. I wont be having a embryo transferred till Jan as I am having surgery on the 2nd of Dec then I am off to Malaysia for uni for 2 and a bit weeks. I thought it would be a better option for me to wait till after traveling just incase i did fall pregnant. The only reason we are doing this IVF cycle now is due to us not having access to donor sperm after 31/12/09 due to some legislative government issues. So this mean with the 1 embryo we have stored and the embryos we will hopefully get with this cycle will be the last ones for us. So the fact that the antibodies have been detected now is a bit of a relief....now just have to hope the next transfer works, fingers crossed.

Claire

[AliB]

All the best Claire with your pending freeze-all, your op, your trip, and may 2010 bring you great success! Sounds like you're in good hands with your clinic staff.

[phynna]

4 1/2 years with my ex trying and one miscarriage. Then about age 23 a wrong blood test (was meant to be for something else) showed i have the anti-cardiolipins, subsequent test showed i have them but not the condition that goes with them, so there was not a need for treatment but i will have great difficulty in falling pregnant and high chance of miscarriage. With my man now we have been trying but bearing this in mind we thought it would take a few years at least. Then i randomly started taking aspirin every day and within a month i was pregnant, and am nearly 30 weeks now with no complications :-)

[Curmon]

Its great to hear positive stories!!! I am getting so excited about my next transfer in the new year with the clexane injections, just have to try and stay positive.

Claire

[farmgirl77]

Hi Curmon,
for what you have been through to this point and for your diagnosis. I was tested positive to antinulear antibodies (ANA) after 4 failed transfers, and only because I pushed for the tests - they normally do that set of testing after 8 failed transfers. ANA is thought to contribute to misscariages and failure to implant for embies. I was put on asprin and heparin injections from the day of transfer and now have a beautiful baby boy...and lots of brusies on my tummy even after stoping the injections at 20wks - no more bikini's for me!

It sounds like you have a very busy few months ahead and I wish you all the best. You and your DP have been through a long journy and I really hope it is about to come to an end and a new one start!

Best wishes
FG

[Possums]

I also send you all the best...I too have those antibodies and have been told I will put put on clexane injections from the day of embryo transfer. It's hard having lots of things to deal with, but hopefully each discovery brings us a step closer to our goal. Good luck!