Can you develop APS later in life or are you born with it?

I have had a perfectly healthy pregnancy and baby. After this I had 6 miscarriages and I was finally diagnosed with APS. The hospital I am under has very little understanding of the subject (it seems). I just don't understand how I have got this after having a perfectly healthy pregnancy - any responses welcome.

14 Replies

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  • Hi hon

    Welcome and glad you found us, I`m so sorry to hear of the awful losses you`ve suffered. I know lots of us understand and feel for you.

    I`m not a doctor but I think from what lots of us have experienced we have some symptoms all our lives, but as antiphospholipid antibody levels rise and fall, it may be that lower levels allowed your first pregnancy to be so successful, thank goodness!!!!

    It is also believed that some traumatic event may be the trigger.

    It is possible to go ahead and have a successful pregnancy with aspirin and heparin.

    I know there are others on here who have had similar experiences when having their children, it is one of the mysteries of Hughes Syndrome, us weird sludge bloods.

    Hope today a better day.

    Take care gentle hugs love Sheena xxxxxxxxx :-) :-) :-)

  • Hi there, I can totally relate to your story ........I too had two normal pregnancies followed by 7 miscarriages and other illness,s that didn't make sense at the time, I never managed to have anger child, and was diagnosed at the age of 49. There are some great articles on the website that maybe you could copy for your local hospital's reference.

    So glad you found us, you will find lots of people who have suffered like you, so don't hesitate to Ask. Take care and warm smiles to you

    :) Lesley

  • I believe that you are born with the tendency to develop APLS but may or may not develop it later. Sometimes an illness or stress can trigger it. Sometimes age or pregnancy can set it off.

    It's not uncommon to have one or more successful pregnancies followed by miscarriages or other apls issues. Since APLS is an autoimmune disorder it makes sense that a baby inside you which contains material from another person so is foreign to you might trigger an autoimmune response and so sensitise your body either for that pregnancy or later ones.

    As jessielou mentioned it is common to be on low dose aspirin and some form of heparin during pregnancy and that increases the chances of a live birth from around 20% to around 80%.

    As well as this wonderful forum there is also a specific pregnancy and miscarriage support Hughes group at health.groups.yahoo.com/gro...

  • Hi Tassie

    Please could you let me have the name of this group as when I click on the link it says access not allowed?

    Thanks

    Hazel

  • Hazel I'm sorry but that group is now closed. It just got too much for me and no one wanted to help with admin so I had to close it.

  • No worries - thank's for letting me know.

  • I suffered a " missed abortion" with my first pregnancy and they had to do surgery to remove it. The fetus died at 8 weeks and I carried it til 14 weeks without knowing. One year later I gave birth to a healthy full term 9lb daughter, i had no health problems during this pregnancy. Three years later I had a heart attack while 20 weeks pregnant. Thats when all 3 of my clotting disorders and my lupus sle were found. I did heprin shots at first, then they became non theraputical so i had a heparin pic line put in and I carried a back pack with a huge bag of heparin and a cad pump, and it would pup it into me... They admitted me and induced my labor at 34 weeks and Savannah was born and weighed 9lbs 12.6 oz, the specialist said had we gone full term she would have been over 12 pounds. I did have her natural they gave me a spinal, but it did not work...They highly recommended that I have my tubes tied, due to being on lifelong coumadin so I did..Three years later in 1999, I was rushed to the hospital with a tubal pregnancy that had burst and because of coumadin I lost 40 percent of my bodies blood volume into my abdomen. My inr was only at 3.4 so it wasn't to high. I had to have 5 bags of plasma to bring the inr down, and then had emergency surgery and had 5 blood transfusions...Sorry this is so long, but wanred to explain my pregnancy issues with Aps..Please excuse any spelling typos, I am trying on my cell phone.....

    Gentle hugs, Renae

  • I was very lucky and have not had any miscarriages, but both of my pregnancies made me very ill - almost as if I was allergic to being pregnant. I had 24 hour sickness for the full nine months and was hospitalised for several weeks in each due to blood pressure problems and general ill-health. My second one, I spent the last month on full bed rest in hospital having lost the sight in my left eye (they said they had just managed to avert a stroke) and within an hour of delivery, I was diagnosed with a DVT in my left leg. I had had extreme facial pigmentation on my face during the pregnancy ( I am very fair skinned and natural blond but looked as if I was of asian origins by the end of term) and on the first day I took my son out for a walk in his pram I was covered in thousands of tiny blisters on every exposed piece of skin, including the parting in my hair. These all itched and popped the next day leaving red itchy rashes everywhere, which then faded into purple blotches which stayed for 6 weeks, still itching - that painful itch you get. I haven't been able to sit or walk in the sun for longer than 3 or 4 minutes ever since and that is now 30 years ago - I am on auto-pilot seeking out shade and don't even think about it any more. For me, this is when my condition kicked in, but looking back through my teens and even as a small girl, I think I had episodes of unusual ill health that are explained only by Hughes Syndrome. My heart goes out to you with your losses, and I hope that knowing what you are dealing with improves the future for you. xx

  • So antiphospholipid levels can rise and fall! The stress thing explains a bit too. I had four healthy babies, but last one was pretty full on and cried a lot and then a few miscarriages, then APS diagnosis, and now I don't even seem to be falling pregnant at all, but wait and see...

    Your stories are amazing, ladies. What you go through for your little ones!

  • "So antiphospholipid levels can rise and fall!"

    So it seems as many posters had said over this forum. Not really sure if these previous positive results were then interpreted as false alarm / possibly, a mere sign of infections? Suddenly going from positive to negative could result in the diagnosis taken away? Or, "you no longer have this illness"? How do we interpret this phenomenon?

  • I had 6 pregnancy losses and one full term successful baby, I was diagnoed with primary APS 5 months after my last MC ! Since then my tests results fluctuate between positive and negative although I definately suffer with its diverse symptoms...Its all very confusing..I empathise !

  • Thank you so much to all of you for sharing some very difficult experiences. Your posts have been very helpful and heartening, I am always amazed by people's kindness on here. I wish u all good health and thank u again. Am due to see another consultant soon so fingers crossed xxxxxx

  • Yes, it can definitely only appear in later life. I know of patients who have been diagnosed in their 50s and 60s - male and female. They were perfectly healthy until then but one of the triggers must have set it off - in the later in life cases the evidence points to the drugs used during major operations, but it could simply be the trauma.

  • I was diagnosed at 62. I had normal pregnancy.....no problems w/miscarriages...bleeding .....nor later on w/ menopause......I believe my paternal grandmother had APS.....incapacitated by a stroke....suddenly at age 65.....so I think APS was in my DNA....and stressors activated it (?)

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