Antiphospholipid Syndrome Support Group

Antiphospholipid syndrome (or antiphospholipid antibody syndrome) is a disorder of coagulation which causes thrombosis in both arteries and veins, as well as recurrent miscarriage. It is due to the autoimmune production of antibodies against cell membrane constituents. A very rare form is the catastrophic antiphospholipid syndrome, in which there is rapid organ dysfunction and failure.

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  • Hi all, I was diagnosed with antiphospholipid syndrome 13 years ago.  I had 3 miscarriages before they would even test me for any problems.  This has always made me so angry, wasn't it bad enough to lose one baby! After, during and since multiple miscarriages I had three successful pregnancies and have three wonderful, precious children.  Daily heparin injections and monthly scans were so...
  • rcykb1

    new diagnosis

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    Hi Everyone,i was recently was diagnosed with aps after having a full immunology workup performed duirng an inpatient treatment to try to stabalize a secondary condition. I have no vascular history other than varicose veins for which i wear compression stockings. The doctors put me on Clixan for five days thinking that it might help stabalize me but it had no effect so they took me off of it...
  • Bayarea415

    Just dx on May.25,2016

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    Hey everyone im new here an am recently diagnosed...i have done a lot of research and im clear on a lot aspects pertaining to this disease...but i think im dealing with a unique aspect when it comes to this disease and what meds are allowed and not allowed...for ie: certain antibiotics and hormones ect.... So now to my issue of focus...i got my period at a decent age but the older i got it slowly...
  • sraoldenkamp

    JUST DIAGNOSED

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    Hi Everybody: I was diagnosed yesterday and I am still trying to process all this. After a visit to the eye Dr where he saw blood in the back of my eye and sent me to a retinal Specialist. The RS diagnosed me with Brach Retinal Vein Occlusion and told me to go see a Hematologist. After blood test and sonograms in my arms and legs blot clots where found in my arms. I was put in Eliquis. I still...
  • sraoldenkamp

    NEW

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    Hi Everybody:I was diagnosed yesterday and I am still trying to process all this.After a visit to the eye Dr where he saw blood in the back of my eye and sent me to a retinal Specialist. The RS diagnosed me with Brach Retinal Vein Occlusion and told me to go see a Hematologist. After blood test and sonograms in my arms and legs blot clots where found in my arms.I was put in Eliquis. I still have...
  • labba26

    Separation anxiety

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    Hi all! Looking for some guidance my fiance is going away next weekend still in the same state a little over two hours away. I'm so anxious that he'll get hurt or die and I'll never see him again. This is also the first time I'll be staying alone in our house and sleeping without him. I actually have plans with my friends both days he is gone but looking for ways to stop worrying about his...
  • ce1502

    Newer anticoagulants?

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    After having a pe, I will be retested for lupus anticoagulant in a few months. Ive been on eliquis since it happened, and I'm worried that if I do have aps that eliquis won't work?? Does anyone here take any of the newer bloodthinners?Thanks for your help.
  • wkpete

    TIA's caused by Antiphospholipid Syndrome

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    I am a 71 year old male and had a liver transplant 11 years ago due to my antiphospholipid syndrome causing major blood clots in my liver. I had been taking Coumadin for many years prior to this but still developed the clots. I have been on Lovenox for the past 11 years. During the last 2 years I have had recurring episodes which appear to be TIA's or ministrokes. I have read that APS can cause...
  • ClayC

    New Here

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    Hi, I am a new member of this group. But have been here at DS since 2008.I will try to keep it brief.. I am under the care of a neuro, and have been since 2010, when I was found to have clonus, hypperreflexia, bilateral Hoffmans and a few other reflex issues..They ruled out MS, and an upper motor neurone lesion and I was sort of just left.. not discharged, but not treated either.. I still have...
  • deleted_user

    Coumadin and Lupus AntiCoagulation

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    I have been on Coumadin for 2 1/2 years I had a blood clot in Aorta when I entered hospital I was tested for LA it came back positive I was again tested days later after I was on Coumadin I tested negative.I have been advsed to quit the Coumadin for 1 month to test for LA again and if it comes back positive I have to be retested in 3 months .If negative I can stop the Coumadin.How soon can I...
  • gratitudehopefaith

    diagnosis - doctors disagree

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    One hematologist diagnosed APS. Another hematologist disagrees with the first doctor's diagnosis. And though I am thrilled with the thought of NOT having APS, I want to make sure this is right. (Perhaps a third opinion?) Many of you are familiar with the panel of blood tests that must be repeated. The most recent round of testing shows that ACA IgA and ACA IgG are normal, but not ACA IgM. ...
  • deleted_user

    False positive?

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    I have tested positive for APS on two separate occasions, but I was taking Warfarin both times I was tested. My hematologist told me that sometimes a false positive for APS can occur if you are taking Coumadin/Warfarin. Has anyone else heard this from their doctor? If everything continues to go well, I will likely be taken off Warfarin in June (1 year post-PE) and re-tested again to see if I am...
  • Hi all of you... I am so woried. Iam 13 week pregnant after my daughter Joana was stilborn in January this year , the reason unknown. The doctors said if it was a blood clot or umbrical cord accident, the cord was only once around her neck. When I was 6week pregnant i made blood tests and the results shown that i have positive results for lupus anticoagulant (max 42 sec i have 51) . In my 11 week...
  • deleted_user

    Lupus Anticoagulant Disorder...

    Hi Everyone I am new to this support group. I found out last week that I have Lupus Anticoagulant Disorder. I don\'t know very much about it as I just got a phone call from my hematologists office. I don\'t see him until Friday and just wanted to talk about it. I had bilateral Pulmonary Embolisms about a month ago and was in the hospital for 8 days. I am on 7.5mg of coumadin. My INR has been...
  • deleted_user

    Numb Feet, Nerve Pain.

    I am having a new issue, and I wanted to ask if anyone else had experienced anything like this. At least, it may be an APS issue, or it may be a Lupus issue, or it may be an entirely new issue. Who knows? Certainly not my doctors, not yet at least. A few months back I started having slightly sore feet. It felt kind of like I had been wearing narrow shoes, that pressed my toes together. I changed...