pregnant and just diagnosed with aps

Hi everyone,

I was just wondering if anyone has had a similar experience to this and a better understanding of it than I have.

I had a late miscarriage last year at 22 weeks, I was told that a reason for this would probably never be found but my platelets were a little low and the consultant said she would test for lupus because of this. When I came back for the results I had managed to fall pregnant again. Anyway I tested positive for one of the lupus anticoagulants, I think its aps because that's what the nurse at the clinic was calling it later on, it's all a bit overwhelming and confusing at the moment, I'm not sure what the correlation to this and lupus is, its all really confusing. They told me that they normally do 3 blood tests all 12 weeks apart and it's not considered positive unless 2 out of 3 are positive but that given the fact that I am already 9 weeks pregnant and given my previous history they are taking it as a definite positive and treating me with 75mg aspirin and 0.45ml heparin injections daily. They are going to retest again in couple of weeks though.

The hospital are looking after me really well now, I will be having consultant led care with very frequent check ups and scans which I am really happy about and I'm actually starting to feel positive and look forward to my due date in October.

I was reading other peoples posts about aps and all the health problems that some people have, I'm not sure, but what I have must be different to that. I am generally healthy although I get tired very easily, I just thought I was a naturally tired person so I'm not sure if that's related. They told me in the hospital that 3 weeks after my pregnancy I can stop the treatment and go back to normal.

I was also wondering if anyone knows what can cause someone to get this condition? It seems like they don't really know, they told me that it's not genetic though. The first time I remember having low platelets was after I had a very nasty dose of glandular fever when I was 14 that left me quite weak and sickly for the best part of a year afterwards. Could that be the reason I have this I wonder?

I'd be really grateful if anyone had any insight, thanks, Kate.

26 Replies

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  • Hi Kate and welcome

    The good thing is that you have a diagnosis and that you are being given excellent care it seems. We all on here will, I'm sure, be keeping our fingers crossed for you to have a successful pregnancy this time.

    How APS affects people is very varied, with some hardly having any symptoms while others are felled by it and are very poorly. Like you, I had Glandular Fever, in my case when I was 26, and I am certain that that had an effect on upset my immune system. Prof Hughes also thought so too, although I did get abdominal pains in my teens that may have been due to APS too.

    Where are you from and could you please give us the name of the consultant caring for you and the hospital that they practises from, as we may wish to add them to our list of APS aware consultants.

    Best wishes.

    Dave

  • Hi Dave,

    Thanks for the reply and the good wishes. Is professor Hughes an expert in APS? I saw his name in a few other posts I read earlier. I am in Ireland and my consultant was doctor Caoimhe Lynch at the Coombe maternity hospital in Dublin, She is head of the miscarriage clinic there. She is excellent although I think she may be going on maternity leave soon.

  • Hi Kate

    Yes, Professor Hughes is an expert in APS, which is also called Hughes Syndrome, as the Prof first described the condition in 1983 and his colleagues honoured him by naming it after him.

    Best wishes.

    Dave

  • Great to hear of the careful diagnosis and also that somebody in Ireland is taking such great care, as we always need new medical names on the Database! It will also be useful to see if she is handing over her work, due to maternity leave, to anybody with the right knowledge! You have had some detailed answers on here so far, so at this point i will not elaborate other than to say, hello and welcome. MaryF

  • Hi Mary, Thanks for the welcome, I am attending the medical team in the coombe hospital for this pregnancy, I've already met the midwife for this clinic and she knew a lot about the condition and took a lot of time to explain things to me, my first appointment with one of the consultants there will be in 2 weeks, but I think I am in the right hands there.

  • Hi Kate. It is possible to have no obvious symptoms other than in pregnancy. You can also have aps without having lupus. I had pleurisy when I was younger then got a DVT which led to my diagnosis so it can sometimes be an infection that 'triggers' it. I unfortunately lost my first baby at 26weeks but have recently had a healthy little girl with a lot of help from the hospital. Just make sure you ask if you are unsure about anything as it can be daunting as few of the medical staff really knew what I had. You will probably have a few more scans to monitor growth of baby. I wish u all the best with the pregnancy. The injections aren't great but just think what u get at the end of it! X

  • Hi Lani, Thanks for the reply. Sorry for your loss.

    It is great to hear a positive story. I don't mind the injections, it's completely worth it, I'm just so happy that I have a positive solution to manage this condition.

    Just out of interest do you remember what treatment you had during your pregnancy with your daughter, were your doses similar to mine?

  • I was on 75mg aspirin daily plus 7500 (not sure what units are) twice daily injections. This is a relatively high dose though much higher than I should have been on for my weight because I lost my first baby even though I was on aspirin and 5000 twice daily injections. I was very ill though in hospital for 6 weeks. This pregnancy went fairly smoothly. It's normally done on your weight I think but they would look at your individual circumstances for that. X

  • I'm only on 4500 injections once daily. I suppose the circumstances are different though. Thanks Lani x

  • Hi Kate, you sound similar to me. I lost identical twins at 30 weeks due to a placental blood clot prior to diagnosis. I had no obvious symptoms of APS at all apart from a mystery flu like illness aged 20. I'm now 32. I have lots of energy and work full time and exercise a lot so I was really surprised to hear I have this condition. I was told it may only affect me in pregnancy and that I'm mildly positive for lupus antibody. I'm currently 21 weeks pregnant with a single baby (much more straight forward anyway) so like you feeling hopeful.

    From what I know this condition isn't directly a genetic thing although I believe you can have a gene that makes you more susceptible to acquiring it. We believe my grandmother had it and overall had a very long and healthy life. (Lived to 95!) It seemed to affect her only in pregnancy. It's best to be seen by a specialist though just to be on safe side. I wish you all the very best with your pregnancy. Catherine

  • Hi Catherine,

    So sorry for your losses, can I ask are you on any medication in this pregnancy?

  • Yes I'm in 75mg aspirin and 7500 heparin (that's based on my weight as I'm a bit overweight). I saw a specialist at the St.Marys recurrent miscarriage clinic too and this is what they recommended.

  • Hi Kate - Congratulations and we are all keeping our fingers and toes crossed for you.

    I had three miscarriages when I was in my 20's but that was in the 70's when no one had heard of Hughes Syndrome. I had Glandular Fever about two years before I got married and Prof Hughes feels that may well have been my trigger. I thought I had no symptoms either after pregnancy (I had two healthy babies, now 40 & 38), but over the years I had lots of different things, I always suffered badly with balance, had a headache syndrome, was tested for MS because of increasing neurological symptoms. These waxed and waned over the years like flares and in between I was fine. Then about 10 years ago it all started in earnest but I was misdiagnosed. To cut a long story short I had a PE and a stroke before I finally was correctly dx 3 years ago. My father had Haemolytic Anaemia which is where my genes come from. I also have Autoimmune Thyroid Disease and Sjogrens Syndrome. Its common for these three to run together and thyroid problems are also commonly found with Hughes. people often find when they get one autoimmune condition they are susceptible to get more.

    In answer to your question some people can live perfectly normal lives with no symptoms or they find that they can get some later on in life. Others do have some after pregnancy. I don't think its correct to say that you can just forget about it after pregnancy either. Once you have the dx you must be vigilant to the fact that you have the condition so that if you do develop symptoms you can see an appropriate Doctor.

    If I were you I would see an APS specialist after the baby is born and get advise. They may want to evaluate all your test results and decide if you need to be on Aspirin daily.

    For now you don't need to bother yourself with it. Concentrate on the wonderful task in hand which you seem to be having good advice about.

    I wish you the best of luck and please keep us updated with your progress. :-D

  • Thank you, that all sounds like good advice, I will see a specialist afterwards :)

  • Kate: Per the standard diagnostic criteria, you only need ONE (not two) of the three antibodies (on two occasions at least 12 weeks apart). Also, most APS patients are treated with anticoagulants (heparin or warfarin) for at least SIX weeks after delivery and a recent important medical paper demonstrated that the increased risk of clotting postpartum that ALL women experience actually lasts 12 weeks (and they coined the term the 4th trimester). Warfarin causes birth defects, but you can be switched to warfarin (which is a pill) after delivery.

  • Thanks Salty, I only tested positive for one and they are retesting in 2 weeks time, that will be 12 weeks from my first test.

  • My understanding is that one may inherit a possibility of getting an autoimmune condition (my Dad had lupus) but it takes an environmental trigger to actually set off a specific disease. Many of us suspect glandular fever, aka mono in the States. Many of us are diagnosed, and then go years, decades, without significant symptoms. Just be aware. Reduce your likelihood of contracting random viruses by carrying your own pen around for signing stuff, wash your hands frequently, etc. This is a scary diagnosis, but it need not lead to scary results. Be aware and proactive, but don't obsess.

    Kind of like driving: My Grandfather used to say: "Driving a car is the most dangerous things most of us ever do. And there are a lot of accidents every day. But most of us do fine. And remember: the safe drivers are the ones who know how fragile their judgement can be and so are very careful to follow all the rules about heeding signs and looking twice. They might even call themselves "bad drivers, " but they still drive and ride in cars because thats what modern people do. The unsafe drivers are the ones who think they are the "kings of the road" and are such wonderful drivers that they can bend the rules whenever they want. Those self-identified "bad drivers" are actually the good drivers. The self-identified "good drivers" are the dangerous ones."

    As with many of Grandfather's lessons this one I have applied to many aspects of my life. Being pro-active is not the same as obsessing. (One friend predicts that because I am so careful to wash hands, exercise, eat healthy that I am actually going to out-live her and all of our friends, because they don't think they need to be careful.)

    Any of us, despite how careful we are behind the wheel, can end up victims of a fatal car crash. Any of us with APLS can end up with hard-to-control symptoms. But don't obsess. Take your energy and turn it into proactive behavior.

    Call yourself a "bad driver" and you will actually be a good one. Know that your health is not invincible and you will probably be healthier because you won't think you can bend the rules and get away with it.

  • I do consider myself a bad driver, haha! I didn't realise that I would need to be extra careful of infection, although it goes without saying when I am pregnant anyway I suppose. I actually very rarely catch a cold or virus these days luckily, but I do look after my health, eat healthy, don't drink etc. I will take your advice, thanks :)

  • I am diagnosed with APS after losing two babies with 23 and 24 weeks. I don't have SLE, and I never had very obvious symptoms of APS other then miscarriages and preterm labor.

    This time I'm due in october and I am on clexane 40 mg and aspirine but when I am not pregnant I don't need bloodthinners.

  • Hi Maira, You sound similar to me. Congratulations, I am also due in October, let me know how you are getting on :)

  • Hi kateg84,

    Congratulations on your pregnancy. I'm currently on Fragmin (5000 International Units a day) and 75mg aspirin as I'm 17 weeks pregnant after 2 miscarriages (and an unrelated loss). I too had glandular fever in my teenage years and the only other symptom I am now aware could have been connected is migraine. I will be continuing that until 6 weeks after birth and will have additional scans at 24, 28 and 32 weeks to check all is well.

    I'm pleased you've got a diagnosis and are feeling positive :)

    All the best.

  • congratulation bat friend, please let me know how you get on :)

  • Hi Kateg84,

    I had 2 miscarriages, then a baby nearly 2.5 years ago (i was on baby aspirin during that pregnancy), then another miscarriage at 13.5 weeks in December (also was on Aspirin). I was finally diagnosed with APS in February. I am now pregnant and the due date is also in October. I am on 75mg Aspirin and daily Clexane 40 mg. I am not sure for how long I will be on these medications as did not have a consultation yet which worries me.

    I also had a mysterious flu-like illness when I was 17 and last year blood test showed antibodies for glandular fever so I guess that was when I had it.

    May I ask you if you are already under consultant care (do you live in the UK?). I was told today that I will most probably see a consultant at around 20 weeks. Do you get bruises from the injections? I started getting quite bad ones now :(.

    Good luck with your pregnancy,

    Olga

  • Hey Olga,

    I am in Ireland, not UK. I'm seeing the consultant next week, they told me it will be once a month at first, then every two weeks, then every week at the end, I'm going to ask can I be seen more often though in the beginning because I had a miscarriage at 22 weeks, so I am most worried about the weeks coming up to that. If you're not happy just go in and say that you are very worried and would like a sooner appointment. I have already been into the emergency room twice in my hospital because i was worried, although i don't recommend it, because i got myself into a total state worrying and I felt pretty silly afterwards but i suppose if you keep making a fuss they will realise that you need the attention for your own piece of mind and sanity. If they aren't helpful then maybe you could find a private clinic that has a trained sonographer but isn't too expensive so they can watch your baby's growth as closely as you'd like or get your gp to refer you to a specialist or something like that, just something that will give you piece of mind, because I know how worrying it is. I'm sure that they know what they're doing, now that they have diagnosed you and started treatment anyway, I'm not saying you need to do that but I'm just suggesting it because I know what the worry is like. You are probably almost past the 13.5 weeks now which will be a relief I'd say.

    Yeah I get bad bruises too, I think when the air bubble isn't fully at the top and I can't quite get it to the very top is when it bruises the worst.

    Congratulations and best of luck with your pregnancy and let me know how you're getting on x

  • Hi Kate, thank you so much for your reply! Can I please reply to you on your email? My email address is om206@soton.ac.uk. Many thanks xx

  • Hey Olga, yeah no problem, it's kate.geoghegan@gmail.com mail me anytime x

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