APS after 3 miscarriages and a still birth AND a premature baby?!!

Hi all, I don't know how this works but I thought I will give it a go. I was recently diagnosed with APS after I had 3 miscarriages and still birth but they only decided to test me after I had still birth and 3 miscarriages which I had to fight my GP who thought it was all in my head and I was absolutely fine and somehow I was depressed? However another doctor of the same GP had told me previously about this horrible disease name which was all new to me as soon as I read it online I knew I had it and that I wasn't mental or depressed :( my GP referred to me neglectently to get tests done. First test came back positive and so did the 2nd and I was diagnosed with APS and Lupus. I was wishing I didn't have it but I was also relived that I had it because now I know the reasons for losing my babies :'(. I was told I would be put to heparin and aspirin only if I get pregnant again. But what I don't understand is why wait when I am pregnant or are they right in saying that? I would really appreciate if anyone replies to my confused questions!!!

14 Replies

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  • I am very sorry for your losses ... such a difficult journey for you.

    I am so glad that you have a diagnosis though as that is often half the battle and at least you should get appropriate treatment if you fall pregnant again.

    Sadly if you haven't had a clotting event other than miscarriage the chances of any other treatment are slim unless they treat individual symptoms.

    It is quite standard for them to only offer treatment to women while pregnant if their 'only' symptoms are miscarriage/stillbirth.

    If you can find a doctor who specialises in APLS you may be able to get a better care plan.

    Perhaps if you mention what area/country you are in someone here may be able to recommend someone for you.

  • Hi and welcome to this site,

    First of all I am so sorry for your 3 losses and stillbirth.

    I totally agree with what tassie has said that you need an APS-doctor now that you also have a diagnose.

    We are many here that have had to struggle with incompetent doctors that do not know what APS is and who have told us it is all in our heads. I can assure you it is not!

    If you are in England please look at hughes-syndrome.org/selfhelp (specialists in your area).

    Personally I have not had any miscarriage but there are several women on this site that have had healthy Babies with help from others on here and a competent APS-doctor so stay on here!

    Best wishes from Kerstin in Stockholm

  • I am so sorry for your loss. I have had four miscarriages and now a healthy baby girl born full term with the help of 150mg aspirin, 5000 units of heparin, high dose frolic acid and a daily cyclogest pessary. I didn't start the aspirin or heparin before positive pregnancy test and this standard treatment for ladies like us who have no other symptoms apart from pregnancy loss as if you are on anti coagulation before it can effect implantation.

    I was petrified in my fith pregnancy and everyone on here and the success stories really helped. I paid to see an APS specialist who tested my blood and found I needed 150mg of aspirin not the normal 75mg. Can you ask to be referred to an APS specialist? Or pay to see one? I saw Mr Raj Rai at St Mary's in London (I live in North Yorkshire so would never have gotten an NHS referral) and he was fantastic.

    Cxx

  • Hello. I too am very sorry for your losses. My story is similar: 3 second trimester miscarriages and two ectopic pregnancies. However, I went on to have two full-term pregnancies with the help of heparin. At first I only injected after a positive pregnancy test but that led to my last ectopic so, armed with information from a reproductive immunologist in the States, I managed to convince a different obgyn to prescribe pre-conception heparin from day7 of my cycle and it worked!

    I also have APS but have had no clotting events ouside pregnancy. I'd try to do pre-conception heparin, if I were you as it helps keep the 'what ifs' at bay.

    Good luck with your journey! Be positive; it will happen for you! And don't let people (especially doctors!) confuse grief for depression!

  • Hello. I too am very sorry for your losses. My story is similar: 3 second trimester miscarriages and two ectopic pregnancies. However, I went on to have two full-term pregnancies with the help of heparin. At first I only injected after a positive pregnancy test but that led to my last ectopic so, armed with information from a reproductive immunologist in the States, I managed to convince a different obgyn to prescribe pre-conception heparin from day7 of my cycle and it worked!

    I also have APS but have had no clotting events ouside pregnancy. I'd try to do pre-conception heparin, if I were you as it helps keep the 'what ifs' at bay.

    Good luck with your journey! Be positive; it will happen for you! And don't let people (especially doctors!) confuse grief for depression!

  • Hi, I'm so sorry to hear of your losses. I had 2 miscarriages before they tested me - policy in Ireland is to test after 2 if you don't already have children. I had been going to the early pregnancy clinic for scans due to spotting and the previous miscarriage so I'm not sure if this helped me to get seen by the pregnancy loss clinic. Anyway I tested positive for APS and got pregnant very quickly after the 2nd miscarriage so I hadn't had the follow up test to really confirm I have APS. The consultant told me to start the aspirin right away. They said I would need an early scan to make sure it was not ectopic before starting heparin because heparin would cause internal bleeding if it were ectopic. I started on the heparin at about 6-7 weeks. They too told me that I would not need aspirin or heparin outside of pregnancy - I guess pregnancy with APS is what makes the blood sticky. Unfortunately for me, it didn't work this time round and I had a third miscarriage. I go back this week to confirm diagnosis of APS and get results from chromosome tests. I have read many positive outcomes from people with APS, so I would say never give up. It's hard, really tough to go through but I'm still going to try and try and not give up. Use all the support networks you have, I found talking to the Miscarriage Association a great help, it's run by women in similar situations. Also make sure write down all your concerns going into the consultant and ask lots of questions.

  • Hello to you today

    I am thankful you found your way onto this site with all of us.

    The support has helped my significantly.

    I too have had miscarriages in my younger years with an ectopic that burst.

    God provided me with two sons and I have adopted since to further build our beloved family.

    There is always hope, and finding the right doctor that is knowledgeable is critical

    I was not diagnosed until I was in my 40's

    When I was trying to have children no one knew what was wrong, I do not believe they had knowledge of APS

    I was diagnosed APLS, w/Lupus non specific

    The specialist in Oregon USA has me on 7.5 ml of Warfarin daily, I am a vegetarian, mostly organic, I focus heavily on hydration, I keep my INR level from the Warfarin at a 3.5 most always.

    The emotional struggles that bounce upon those of us that have lost while striving to have children is heavy yet there is hope, my sons are now 26 and 24 years old and I had natural births and they were and are healthy children/men :)

    My youngest son is now being tested for APLS as he has seizures and struggles in ways that are familiar with me.

    This forum has helped bring support to my heart as not too many are familiar w/the struggles behind this disease. Lean into those that get it for support, it helps lighten the load and brings smiles and encouragement.

    Becca

  • Thank you all for your kind and lovely words it had me to tears to know I'm not alone in this and that I still have hope to have a full term birth without complications. I live in London i'm going to look for a specilist because I believe most doctors are not aware of the risk of having APS. Thank you all once again :)

  • Hello and welcome

    Please look at here for a specialist in London: hughes-syndrome.org/self-he...

    Many of us have had to pay to see a consultant, privately, at the London Lupus Centre.

    Please let us know how you get on.

    Best wishes.

    Dave

  • I'm seeing Dr. Khamashta he is excellent he sees private patients once a week in London lupus centre and at St Thomas for NHS he helped me a lot as I have APS and Sjogrens hope this will be of some help

  • I have had two miscarriages and a still birth before diagnosis. I went on to have a healthy baby in July this year on heparin and aspirin. I have the lupus anticoagulant antibody but not lupus disease. Therefore primary APS/Hughes. Do you have the lupus antibody? If so it doesn't mean you have lupus but this antibody is strongly associated with pregnancy loss. I took heparin like the above post at day 7 of cycle onwards and this for me made the difference. It's the implantation that needs the helping hand and sets the tone for the rest of the pregnancy. Good luck- don't give up!

  • Hi, thanks for your reply they said I have Lupus antibody as well which caused me to have miscarriages and still birth. I have a son who was born premature at 32+3 and he is now a healthy 4 yr old. They told me then I had pre eclampsia but just recently diagnosed with APS.

  • Lupus antibody also causes pre eclampsia due to the blood clots in the placenta. Hopefully with the right treatment you'll have a successful pregnancy. Glad your little boy is doing well. :)

  • Hi sorry for your loss, I was living in Hastings East Sussex England and 21years ago I was diagnosed with APS after I had suffered three miscarriages two of which were still born at 6 mths gestation.And had two small babies , one was full term weighing 5lb 1 1/2ozs and one very premature baby who was 8 weeks early,weighing 3lb 10ozs and my daughter who was 6 weeks early and breech, who weighed 5lb 2ozs , I was rushed back into hospital after my second still birth with a blood clot in my calf, whilst I was there a wonderful doctor was on call whom happened to be a diabetic doctor and was interested in my problem. He took time to research what had happened and diagnosed me with APS,not much was known about it back then, but he advised me that if and when I got pregnant again that he would help me through it,. He said I would have to injected my self with heparin daily and have blood tests every week, to see how my blood was reacting so that I have to adjust the dosage of heparin I needed. Also I had many scans to see how baby was growing etc. Also I was told I needed a cervical cerclage (a stitch) to prevent my cervix opening during the pregnancy too early causing miscarriage. Even though my son was born six weeks early but was a good birth weight 5lbs 6ozs. I then had to gave warfarin for 9 weeks after the birth. But I only now take low dose aspirin every day and have my blood checked every two years to see what the APS levels are. So out of 7 pregnancies I had 4 babies that have thrived and gone and grown up into lovely young adults. As I said not much was known back then compared to what is known today. Hope this can give you some hope and guidence .

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