anticardiolipin antibodies

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Steph77
New Member


Date Joined Jun 2007
Total Posts : 13
   Posted 11/10/2008 4:24 PM (GMT -7)   
I went to my Hematologist. This time the lupus anticoagulant came back negative, but this time the anticardiolipin antibodies came back pos. Doc says to sit tight and not do anything. This makes me VERY uncomfortable. I have to find another doc for a 2nd opinion. I just feel like it's never ending... Is this normal? Why one minute one test is pos and then neg? I don't get it. I want to rip the hair out of my head. I've had a healthy pregnancy- never any miscarriages. Am I at risk for that too now? Why hasn't anyone discussed this with me?
Hashimoto's Thyroiditis, Pernicious Anemia, Undifferentiated Connective Tissue Disorder, reynoids. Monthly B-12 shots, Plaquenil prescribed, but haven't started on it yet. All diagnosis within 10 months. Positive ANA with a nucleolar pattern. Rheumatoid factor is sometimes positive and sometimes not.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/10/2008 5:34 PM (GMT -7)   
Hi Steph,

I wonder if the Hematologist has compared the "thickness" of your blood with the risk factor associated with the anticordiolipid antibody. I just don't know a lot about how that is treated, except that the goal is to make sure the blood is thinned to a degree that prevents strokes etc.

Ginny knows quite a bit about it though. She is out for a while and is recovering from a recent surgery.

I hope some of the other members will be able to help.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/11/2008 7:41 PM (GMT -7)   
Hey Steph,
 
I think a lot depends on how high your titre is.  For some people, the APS is quiet enough to treat with aspirin daily, for others like me, it's treated with coumadin to keep the blood thin.  I tested high positive.
 
It's not something to "sit on and wait for".  The sooner you get treatment and get your blood thinned, the better off you'll be.  There is a high risk of stroke or heart attack with APS if it isn't treated.  I wouldn't wait for your doctor to make the first move.
 
I hope this helps. I know it's scary.  Yes, you are at a risk for miscarriage. In my case, the likelyhood of even conceiving was next to zero.  But it's different for everyone.
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Steph77
New Member


Date Joined Jun 2007
Total Posts : 13
   Posted 11/14/2008 4:39 PM (GMT -7)   
this is all just too scary right now. I want to disappear.
Hashimoto's Thyroiditis, Pernicious Anemia, Undifferentiated Connective Tissue Disorder, reynoids. Monthly B-12 shots, Plaquenil prescribed, but haven't started on it yet. All diagnosis within 10 months. Positive ANA with a nucleolar pattern. Rheumatoid factor is sometimes positive and sometimes not.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/14/2008 4:45 PM (GMT -7)   
Hi Steph,

Knowledge is power. Its actually a good thing that you are aware of your potential risk. Digesting it will take some time. We each go thru a process each time we add one more issue to our health status.

To help me work thru tough issues, I usually figure out the worst case scenario and then eventually determine where I fall on the spectrum of best case/worst case. It IS a really difficult process, emotionally. I really feel for you Steph.

Now, having said all that, make sure you talk to your doctor's office and see what levels they have checked and what your risk factors are and what your options are for treatment. If they are willing to set you up for a some of follow-up blood tests, you will become confident that they have your blood managed well.

Keep bugging them until they've given you all the info you need to feel confident in your treatment. it is your health and you have a right to understand what is happening in your body and to feel confident in your level of treatment.

I hope you'll keep us posted.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 11/15/2008 10:37 AM (GMT -7)   
Hello Steph

Don't be scared! There a a lot of us walking around with these antiphospholipid antibodies that never affect our health. It isn't known why in maybe a third of us that has them they suddenly play up. They can even appear in pregnancy and disappear afterwards. Either the anticardiolipin tests or the lupus anticoagulant can be positive at any time or negative. That's why both tests are usually done together. Levels can vary too just as the body goes about its normal business so both tests need to be done at an interval of at least 6-8 weeks to see if they are constantly present and at what levels. They are not always due to autoimmune disease either. Leverls can be abnormal in infectious or other diseases so often certain tests are also done which indicate if they are autoimmune in origin
There is no treatment when there has been no associated event. One of the many advantages of Plaquenil is that it slightly thins the blood and many of us also take a low dose aspirin for the same purpose. These together can help greatly with some lesser symptoms such as brain fog when it is due to these antibodies.

I would be far more worried about allowing the disease to get worse by not taking Plaquenil which for most people brings only benefits.
Good Luck
BB

Post Edited (BumbleBee1) : 11/15/2008 10:49:15 AM (GMT-7)


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/16/2008 4:13 PM (GMT -7)   
Hey Steph,
 
Oh, don't be scared.  Like the others have said, knowledge is power.  Just take what you're learning to your doctor and they'll get you on the right path.  I have a high positive for APS, but everything is hunky-dory now that I'm the right meds.  You'll do great!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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