Strongly positive

I am new here and have a few questions. It seems most people on here are receiving treatment of some sort. After numerous miscarriages I tested strongly positive twice. I was told to start baby aspirin daily and had two live births :) the hematologist and rheumatologist have decided without a heart attack or stroke etc I do not officially have it and therefore will not receive treatment until I have an event. I have been tested for lupus and RA numerous times and always come back negative. My bio mom has RA and bio aunt has lupus. I seem to have symptoms that come and go with no diagnosis and no treatment. Any suggestions would be great. Thanks!

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  • If you have a positive result you do have it, and I will add here some of us are Sero negative and we also have it, I have had many clots in the past, but these confined themselves to pregnancy only. It is possible to go in and out of positive/negative testing. I have been on Aspirin only for years. However it has been made clear to me that if my situation were to change then I would probably have to have something else. You need to keep an eye on your symptoms, if they are happy that you are having no outstanding symptoms on Aspirin only and no clots, they will be probably thinking that is all you need, however this does not remove the need to keep an eye on yourself, do note down any new symptoms. It is an unstable condition and can change over time.

    There is a new section on the charity website regarding Seronegative Hughes Syndrome/APS. Also under the usual symptoms there is plenty of information. Perhaps send this to the people involved in your care. I have done the same in the past, both for myself and my children.

    The fact that you have had two miscarriages and two positive test results indicates that you must be monitored,

    MaryF

  • Hello, My diagnosis came about through two positive lupus anticoagulant test results more than 12 weeks apart, and a brain MRI showing white matter changes. Plus, of course, a sympathetic rheumatologist who actually listened to me about all my symptoms and who examined me properly (picking up the livedo reticularis, which I'd not even thought about as I've had it for forever!). It helped that I wrote it all down to take with me. Saying that it took a long time and a few bounces between Neuro and rheumy! Persist and maybe get your doc onside. Take care x

  • I had tested positive in Feb 2014 after my gynecologist did testing after 2 miscarriages. I was prescribed a daily shot of enoxaparin and a baby aspirin while trying to conceive. I recently went to a hematologist in Jan 2015 to make sure this was correct course to help prevent further miscarriages. She stated that people can go from positive to negative but if you have had 2 positive tests as long as 12 weeks are in between tests than you are classified as having antiphospholid syndrome. I did test positive again and she said since my clots were only due to pregnancy to take the shot and aspirin daily. if we decide to stop trying to just take the baby aspirin. I asked about an other blood thinner to take and said with my age 42 taking this for so long I run a higher risk of a deadly bleed than a blood clot. Until if I ever get a blood clot not due to pregnancy than they would treat with a blood thinner.

  • I have to disagree with what you have been told. Doctors are always fearful of putting people on anticoagulants because of bleeds but they cannot say that there is a higher chance of you having a deadly bleed than if you have a clot! I had a PE (clot in the lung) in my 50's. I didn't know I had APS. I had previously had 3 miscarriages, been tested for MS, had all the symptoms of APS but wrongly dx with something else. They did not test me for APS and just gave me warfarin for 6 months and then stopped it. I went on to have a Stroke five years later. Im now on Heparin for life. I was diagnosed with SN-APS although I have now had a strongly positive test. The point is, any Doctor who says they are going to WAIT for you to have a clot is not worth sticking with. Find yourself another Doctor who is prepared to treat you now. Do you really want to risk brain damage for the sake of this Doctors insurance premium! Im sorry if that is blunt but it is our lives they are playing with and we must stand up for ourselves and start making informed decisions for ourselves.

  • I could not agree more! MaryF

  • Well said! I totally agree!

    Kerstin in Stockholm

  • I think you need to press your doctors for blood thinners. I wish I would have been tested for this disease years ago. I could have known what to look out for and I could have potentially prevented the long term damage that my DVT has done to the veins in my right leg. I would have at least been on baby Aspirin for the years leading up to my accident and subsequent DVT. That might have saved me the long term disability that I now live with. At the very least keep an eye on yourself. If you injure your leg, even just a minute injury, please be aware that is all it takes to develop a DVT for us. All I did was sprain my ankle and a DVT developed; and it has been a long road to recovery for me three years after the fact. I hope you get this all worked out with your Doctor as soon as possible.

  • I agree, I caught my leg last week and got a huge bruise form on the calf area the size of my hand. After two days it was very hard so I called my GP and got them to check it out for signs of DVT. My first PE came from a broken ankle. Its always better to be safe than sorry.

  • Following with interest as I'm in a similar situation. Which part of the country are you in?

    I have had 3 miscarriages, and one live birth after taking aspirin and progesterone. I was diagnosed last month after the birth of my son last May. I haven't been put on any medication yet; discussions about meds seem to be based around trying for another baby - I'm to go on aspirin and heparin with any subsequent pregnancies. My GP has queried whether I should be on aspirin if we are trying to conceive but I'm also still breastfeeding our 9 month old and ideally would like to up until he is 1 in May and I'm not sure if I can take aspirin while breastfeeding?

    In the meantime I am wondering if I should be on aspirin or some anticoagulant anyway, regardless of ttc? I've had two positive tests and diagnosis of primary APS but waiting for my lupus tests to be repeated. Seeing consultant next week for results of those. I should say that apart from the miscarriages and some horrible headaches and occasional stiff joints I lead a pretty normal life.

    Spoke to a helpful lady at the Foundation last week who seemed to say that Hughes can exist only in pregnancy...have I understood this correctly or am I at risk of clots outside of pregnancy too?

    My consultant rheumatologist is not on the list of specialists either and I am wondering how necessary it is to travel to see one on the list and how to tactfully ask how experienced my consultant is in treating APS. And for that matter the Early Pregnancy Unit in my area should I need them again... So many questions! Thanks

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