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  • Anticardiolipin Antibody/Phospholipid Syndrome

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    Old 04-03-2004, 01:23 PM   #1
    beachbound3
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    Anticardiolipin Antibody/Phospholipid Syndrome

    Hi,

    I was concerned after the response that I got to my initial post and would like some more feedback. I have a history of miscarriage, elevated IGG cardiolipin antibody, on heparin injections twice a day for my pregnancy, 2 days after delivery- while still on heparin injections- I developed 3 clots in my left leg. I was on coumadin for 6 months, but then it was discontinued.
    The last time my blood work was checked- the antibody level was normal- I had just come off a week of heparin injections following another surgery. Can the antibody level come and go?? I called my rheumatologist about my concern and he said that "he is not worried about that at this time". I don't know what to do- the town I live in has one group of rheumatologists- and once you see one- you can't change and see another in the group. I am 39 years old and after reading the notes of my high risk OB- he stated he felt that I had the ACA since my first pregnancy 12 years ago, because I developed pre-eclampsia in week 27- which is a common occurence in first pregnancies with the antibody?. Does this sound familiar to anyone??? Any advice or personal experience with this situation would be greatly appreciated.

    Thanks!!!

     
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    Old 04-03-2004, 05:19 PM   #2
    AngelicBrat
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    Re: Anticardiolipin Antibody/Phospholipid Syndrome

    Hello beach!

    This does sound familiar, you will meet MANY people that have had the antibody come and go. So YES, the antibody can go away and into a 'missing' stage for awhile but you can still clot even when the blood work is negative! Since you had just finished your heparin my guess was that the antibody was under control. I do NOT believe what your doctor said. A positive antibody with history of miscarraige can NOT be ignored. It sounds like you have Antiphospholipid Syndrome. How many times had the antibody test been positive? You need to have that antibody checked over and over since you have had it positive in the past. ALSO you must make sure that your GP or other doctor knows what the heck APS is! You cannot go on without being on blood thinners because you are at HIGH risk for strokes, leg clots, miscarraiges, heart attacks, etc etc etc!! You need to keep your blood thinned. I have a question. When they thinned your blood out with the heparin, did you notice that you felt better? If you did, its probably because you have the antibody and the history to support it and many of us have a decrease of symptoms once we are treated. I really hope that you can find a Rheumatologist that will take you seriously. that is something that some of them ignore and take a "sit back and wait" approach. If you do have a stroke, leg clot or another miscarraige you can sue the pants off of them! Just so you know They hate hearing those words! Its just so ridiculous that they do the tests for APS but when they are positive they have NO clue what to do! It was great that they had you on the heparin for your pregnancy, but you need continued blood thinning with Warfarin/Coumadin to prevent further clotting. Please take care darlin!!!

    ~Luv Angelic XO

     
    Old 04-03-2004, 05:33 PM   #3
    Sampy123
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    Re: Anticardiolipin Antibody/Phospholipid Syndrome

    Beach,
    Angelic is right on the money with what she told you. Also, alot of drs. don't like to diagnose APS without a second confirmed test. The fact that you tested positive once and had a miscarriage is enough of a reason to believe you probably have APS. If your dr. doesn't know enough about it, I strongly suggest you look for another one. Shari

     
    Old 04-04-2004, 10:08 AM   #4
    beachbound3
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    Re: Anticardiolipin Antibody/Phospholipid Syndrome

    Quote:
    Originally Posted by AngelicBrat
    Hello beach!

    This does sound familiar, you will meet MANY people that have had the antibody come and go. So YES, the antibody can go away and into a 'missing' stage for awhile but you can still clot even when the blood work is negative! Since you had just finished your heparin my guess was that the antibody was under control. I do NOT believe what your doctor said. A positive antibody with history of miscarraige can NOT be ignored. It sounds like you have Antiphospholipid Syndrome. How many times had the antibody test been positive? You need to have that antibody checked over and over since you have had it positive in the past. ALSO you must make sure that your GP or other doctor knows what the heck APS is! You cannot go on without being on blood thinners because you are at HIGH risk for strokes, leg clots, miscarraiges, heart attacks, etc etc etc!! You need to keep your blood thinned. I have a question. When they thinned your blood out with the heparin, did you notice that you felt better? If you did, its probably because you have the antibody and the history to support it and many of us have a decrease of symptoms once we are treated. I really hope that you can find a Rheumatologist that will take you seriously. that is something that some of them ignore and take a "sit back and wait" approach. If you do have a stroke, leg clot or another miscarraige you can sue the pants off of them! Just so you know They hate hearing those words! Its just so ridiculous that they do the tests for APS but when they are positive they have NO clue what to do! It was great that they had you on the heparin for your pregnancy, but you need continued blood thinning with Warfarin/Coumadin to prevent further clotting. Please take care darlin!!!

    ~Luv Angelic XO
    Angelic,

    Thanks for your feedback. I was only tested once initially for the ACA because they were looking for a reason for my miscarriage, not lupus. I did feel better pregnant than I had in years- my last pregnancy I felt awful, but I was amazed myself about how good I felt and how great my energy level was- but I didn't connect it to the heparin. I would think too that with the positive lab test- even if it was only once, in combination with the miscarriage and DVT that I have the condition as well. Even my high risk OB put in his notes that he thought I had it even when I was pregnant in 1992 because of developing pre-eclampsia in week 27? So I don't know what to do, doctors get annoyed if you try to "tell them what to do", but I will ask if they will test again for the ACA since the last time I was just coming off heparin. Have you heard of the SSB going from positive to negative? I feel like my doctor is just blowing me off as some hypochondriac female. Thanks for all your support.
    Lori

     
    Old 04-06-2004, 01:48 AM   #5
    AngelicBrat
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    Re: Anticardiolipin Antibody/Phospholipid Syndrome

    Hi Lori,

    Blood work can go from positive to negative on a daily, weekly or monthly basis. They are playing around with your health, and you are at high risk for redeveloping a DVT. I am concerned more about their lack of knowledge than anything here. I am so glad that you felt better with the heparin, its no wonder.. my guess is that you have APS.

    Do you mean the Anti-SSB test? That one is Lupus related too, and it can fluctuate as much as any other antibody test. Please take care and ask as many questions as you want to The post "Neurological Symptoms and possible Lupus? Please read!" has a lot of good information for doctors.. you could print that off and see if they can check it out for you. A good idea is to get retested for APS.. and if it is positive then you definitely have it! I would guess you do anyway, becuase of your history and clotting events that you have had. Please take care and I can assure you that you will feel like a million bucks if they treat you with Warfarin to keep the blood thin

    ~Luv Angelic

     
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