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.

Anticardiolipin antibody syndrome is usually an acquired condition.  There is no data to suggest that this is an inherited condition, and therefore it cannot be transmitted from mother to child.  It is not a condition that may be transmitted from person to person through contact such as an infection that we are aware of.  This antibody is thought to develop in one's body in response to some event, whether it is a medication, a cancer, another medical condition, or something that occurs that we are not aware of.

 

 

I was diagnosis with ACA after several miscarriages.    I have stopped
trying to get pregnant and wanted to return to birth control for cycle
control but was told that with elevated levels of ACA's I could not go on
any product with estrogen in it.  Is this correct?  What about a low dose
pill or the vaginal ring?

Thank you for your response in this matter
Kat

There are several things that increase the risk of blood clots.  Included is tobacco usage, obesity, sedentary behaviour, surgery, and hormones.  Hormones include pregnancy, oral contraceptive agents, and also hormone replacement therapy.  Since you already have a risk of increased blood clots with the ACA syndrome, you should do everything you possible can to decrease the likelihood of developing a blood clot.  Therefore, hormone supplementation of any kind, including birth control pills is discouraged.

When researchers evaluated normal women and their risk of developing blood clots with oral contraceptive agents, they demonstrated a lower risk in those women receiving progesterone only agents.  However, this population of women did not have any hypercoagulable state.  Therefore, whether these agents are safe in women with ACA and other inherited coagulation states is unclear.  Some physicians feel they may be safe, however they have not been studied so the answer is not known. 

I recommend avoidance of all hormone containing products to lower the risk of recurrent clots.
 

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.

 

I have been diagnosed with Anticardiolipin Antibody Syndrome, I am very interested in any new or updated information about this condition.  Also, I would like to know if there are any Specialists in my area. The physician I am currently seeing has told me that I am a mystery to science and there is too little information on this subject and that he can't give me any answers for this condition.  I am at a loss here.  A blood clot hit my right kidney in 1996 and ever since I have been on Coumadin, they have me on 12.5 mgs. per day.  The dose of Coumadin worries me, how do they know that I still need it or could I take aspirin? Or do I still need anything at all?  I would greatly appreciate any help that you could provide.

 Thank you, 
Laura

Roanoke, Virginia

Unfortunately, there is little information regarding this syndrome.  Much information is targeted at the underlying cause on a scientific basis rather than optimal treatment options.
I do not know what area of Virginia you are near, but would recommend evaluation by a physician who is trained as a hematologist, not oncologist, with specialization in clotting disorders.  Often times, these physicians work with a coumadin clinic or hemophilia clinic.  With the presence of any clots and this syndrome, long term treatment with coumadin decreases the recurrence of future clots in other areas including heart attacks, blood clots in the legs or lungs, and stroke.  This is well documented in the literature.  Therefore, I would definately NOT stop warfarin.  Some believe that the addition of an antiplatelet agent such as aspirin, cilostazol, or clopidogrel may be of benefit to the warfarin, however this increases the risk of bleeding complications and has not been well studied to definately show benefit.  Therefore, if you have done well
with warfarin alone maintaining a therapeutic level at 2.5 to 3.5, I would
continue this.  I usually add additional agents in patients who have not done well with warfarin alone.
the dose of warfarin changes depending upon diet, other medications, etc. Therefore, as long as the INR is between 2.5 and 3.5, the actual dose does not matter.  All that matters is that you are followed closely, the level stays within that range, and you have no additional blood clots or bleeding complications

 I am a 21 - year old female and I have had several venous doppler tests that have not revealed a blood clot, though the doctors I have seen suspect that there was one. I do have an overabundance of B-2 glycoprotein -2 antibody. My left leg is swollen; about twice the size of my left leg and has been this way for about eight months. I quit
taking birth control pills last November, at about the same time I had four wisdom teeth taken out. (I was walking around the next day.) I
have seen a rheumatologist and an internist who say that I will always
have a swollen leg and I will have to wear support hose the rest of my
life. They also say I will have to endure the pain and discomfort I
have now for the rest of my life, and if I get pregnant, I will probably
miscarry. I have an appointment with a vascular surgeon tomorrow. Will
I ever be able to wear short skirts again without embarrassment? I read
your page and it said that although it may be difficult, swelling could
decrease almost to the normal size. What treatment is there? Please
help me. I am desperate for a cure!
Sincerely,
Anne


Dependant upon the size, distribution, extent, and time that you had your
blood clot, there is usually a fair amount of damage to the leg veins that
your body may not be able to recover from. Usually if there is to be
improvement it occurs within one year from the time of the blood clot. If
swelling persists after that time, it is difficult and often impossible to
correct. Conservative measures are helpful and include support hose which make a difference if you wear them religiously which is often difficult to do. I assume you are on blood thinners at present and because of your history will be on them forever. Maintaining a therapeutic level in your blood stream will help. There are pump systems that patients have used in the past to pump up the fluid in their legs, however, I do not feel that they offer any more than good hose ordered to measure at a medical supply store (make sure you are not wearing a pair of hose from the dime store that say support and that these are medical hose because the amount of support differs greatly). There is a lot of research in this area, unfortunately there is little to offer. Exercise is good and should be continued as they will strenthen the muscles and tone them and the swelling that may get worse after exercise should decrease with the hose.
For superficial varicosities, there is a number of cosmetic procedures that
may be of help. A plastic surgeon or dermatologist or aesthetic medicine
person can perform this. Keep the appt with the vascular surgeon to ensure that there is no other problem that may be remedied.
While pregnancy is difficult, we have had several healthy babies from our
patients. As long as they are followed closely during the entire pregnancy
by a high risk ob and hematologist you may be able to carry to term.

 

 

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.

I would like more information regarding clinical testing of ACA.  Are you planning anything in the future, have you ever done any clinical testing?  Obviously, I am one of this syndrom'es vicitms and would like to know more.

Thank you

Joe

UT

Thank you for logging onto our web site.

Under the clotting disorders section of our web site are listed some clinically useful testing for the diagnosis of this disorder. However, the levels of the antibodies may wax and wane over time making it difficult to diagnose. In addition, an expert clotting lab with excellent technique must be utilized for the more sensitive clotting assays to make certain there is no false positive or negative results. There are several reference clotting labs in the United States that accept samples for testing and also accept insurance as payment.

I have been told there is the formation of a federally funded consortium to study this disorder in order to collect additional data so that we can evaluate the testing as compared to how patients do clinically. This will hope to improve the knowledge that we have of this disorder in order to make better recommendations for those affected. I have no further information regarding this at this time but hope that it will improve the lives of those affected. We continue to collect information into our database in the hopes that it will shed light on this disorder.