ANTICARDIOLIPIN ANTIBODY SYNDROME

Good web site!  Can you tell me what factors interfere with the anticardiolipin antigen test?  Should it be done after fasting?  Does taking the test while blood clots are still present affect results?  I’ve seen conflicting info on whether it is o.k. to take the test while on Coumadin.  Thank you for your help.

There are several tests to identify whether an anticardiolipin antibody is present.  There are clotting tests often termed "lupus anticoagulant" testing.  These entail different tests, the most reliable includes the Staclot LA, or Dilute russell viper venom time with platelet neutralization.  Because these are clotting tests, they must be run in a specialty laboratory and processed with care.  While on oral blood thinners such as warfarin this test may sometimes be difficult to interpret.

The antibody test tests whether the antibody is there using an ELISA.  Since this is not a clotting test it cannot be interfered with by any blood thinning medication.  There are several different antibody that can be tested for.  Unfortunately, not all of these tests are standardized.

None of these tests are affected by eating, therefore fasting is NOT necessary.  Some believe that testing for clotting disorders immediately after a clot is discovered may be misleading, but this has not been well demonstrated.  

Remember that the antibody may wax and wane so all positive tests should be confirmed.

 

 

Does the anticardiolipin antibody ever appear and then go away?  I was told that I was positive on two different tests since August 2002 and have been on Coumadin.  Over the last few months I am not told two other tests have come back negative and if no untoward symptoms or problems in the next few months I could consider coming off Coumadin and seeing how things go.  I would love to be off it, but I am very nervous about being off it and having another MI or having a stroke/TIA, etc.  Have you ever seen this before?  I appreciate any info you might have on your end about this.

Marcia

There are several different tests available for diagnosis of this disorder. Clotting tests may be done if not on blood thinners and also antibody tests.  There are several different antibody tests (please see question 1 under ACA and pregnancy for additional explanation)  The few studies we have in persons with this disorder, did not retest patients and see if the tests became negative.  They also did NOT stop the blood thinners at any time as the risk of recurrent blood clots is thought to be high enough to warrant lifelong therapy with blood thinners.  Therefore, there is no documentation regarding your specific question.  The tests may fluctuate.

Standard of care would be that in any person who has had at least one blood clot with positive testing for this disorder be maintained on life long therapy to prevent additional problems. If you have never had a blood clot and have tested positive for this disorder, than blood thinners are not thought to be of benefit as you may never have a blood clot.

Good luck

I am a white female age 37 and was just diagnosed with AAS.  The clot is in my superior vena cava and my internal juggler vein.  I am looking for answers to how to reduce or dissolve the clot.  My doctors here are telling me that nothing can be done.  I am taking coumadin and a water pill to reduce the swelling in my right arm, face, and neck.  I still get very uncomfortable at times and find it hard to do very simple tasks.  They can't tell me how or why I got this antibody, and why I have the clot where it is.  I would like more information on any other kinds of treatment to reduce the clot.  Please help

Amy

In answer to your questions, the body will naturally over time dissolve the blood clot and in the meantime form new blood channels to direct the blood through the occluded area. The clot, after it is in position for several weeks, is stabilized and therefore any of the newer medication used for persons with heart attacks will not work to dissolve the clot. The body has a mechanism called the fibrinolytic system to dissolve blood clots once they are formed, just as a scab heals and falls off. The clot in place dissolves in time. Depending upon the damage to the area, this may be a very slow process and may not return completely to normal.

 

It is wonderful that you have this site.  I will be 40 years old this June.  14 years ago, I had a TIA (with some residual) that has slowly gone away over the years.

At that time there was no information on anticardiolipin or antiphospholipin.  Luckily, the physician who treated me was fresh out of residency and had just learned about this antibody.  2 years ago I was diagnosed with thyroid cancer.  I have since had a total thyroidectomy and 2 parathyroids removed.  Could the blood clotting disorder have anything to do with the development of this cancer?  I don’t have any history of radiation exposure.  Although I am a critical care nurse, I have always used a neck shield during special procedures when there was exposure to radiation.  I don’t like the idea of having cancer in my body – and although the doctors say that it did not spread – I still wonder how it came about.  I appreciate anything you have to offer.

The anticardiolipin antibody has been identified in persons with malignancies.  However in your case, the antibody predated the malignancy by many years and therefore does not seem to be related.  Unfortunately, there is no way to know for sure, but this would be unlikely. 

The etiology of many malignancies is not well defined.  Many persons cannot identify a risk but still have a malignancy, I believe genetics and other environmental etiologies will be identified with the newer genetic studies under way.  What's important is that it was identified and hopefully you will be a long term survivor as are many other lucky individuals.

 

 

Dear Sir;
What a joy to finally find a web site that addresses Anti cardiolipin
syndrome. I was diagnosed with It in Nov 2000 as well as  hyperhomocysteinemia.  And have found very little if any information on it.
I am a 44 healthy active white male, who suddenly was struck down with an "Inter-Aortal thrombosis" that also went to my foot. I received 3 weeks
of Heparin treatment and am now on Coumadin. In February, 2001 I had a TIA.  For treatment, I was told to take vitamin b complex quit drinking and smoking  and continue coumadin treatment. My INR/PT is taken 1-2 times a week and  they try to keep it between 3.0-3.5. My average dosage of coumadin is 10mg's. but has been as high as 15mg as well as 2 60 mg of Lovenox a day.  Even when taking all the coumadin and lovenox my INR PT has been as low as.90 and medication was adjusted and then zoomed up to 6.87 the highest.My question is: Will my INR ever stabilize? will the cardiolipin ever go away? Are there other medication and/or treatments for cardiolipin syndrome?  Any comments and/or links (web sites) or additional information will begreatly appreciated.
Thank You So Much,
Jerry

Dear Jerry,
Thank you for your letter and for logging onto our web site.
We along with others have found, and published in abstract form, that persons with this syndrome often have more difficulty achieving a therapeutic INR.  This is probably because of interference with the way the test is run.  Sometimes other tests such as Factor X activity and Prothrombin Proconvertin Times are ordered, however these are not readily available and therefore difficult to rely upon. We recommend that warfarin adjustments not be done more than once weekly due to the pharmacokinetics of the drug. More often adjustments may result in
more difficulty maintaining an adequate level. However, even under the best circumstances, most of our patients have weekly levels obtained for many years. It is concerning to hear that while on treatment you had a TIA. We routinely place our patients with this syndrome who have suffered recurrent thrombosis while on treatment, on additional agents which include either Aspirin, Plavix, or Pletal to prevent additional thrombosis. There is little data to support this, but we have published our experience in abstract form in Blood and have had excellent experience with this.
I assume the vitamin B complex is to decrease the homocysteine level. This should include B6, B12 and Folic Acid (we use 5 mg daily). This may be
obtained at the health food store, or there is a prescription strength
supplement, Foltx, in which two tablets contain the necessary amounts assumed to lower the homocysteine level.
Good luck to you.