I have APS and I'm a lifer on blood thinners. Once you have a clotting event due to APS, you are at a high risk of having another clot in the future. You should do some internet searches on Hughes Syndrome - that is another name for APS. I tested positive for Lupus Anticoagulant and Beta 2 Glycoproteins in high levels two times over a year apart. These antibodies have been in my system for a long time. Sometimes these antibodies will go away, but they can also return and cause problems in the future. Hughes Syndrome is a disease that needs t be treated with blood thinners. I was actually going to be a lifer on blood thinners even without genetic testing. My Saddle PE was so big they were going to keep me on blood thinners just for that reason alone. O don't think you need to get a new Hematologist, but you can get a second opinion. I know how overwhelming it can be when you are faced with the prospect of being on blood thinners for life. I would be a nervous wreck without my anticoagulants. Having a fighting chance against another blood clot give me peace of mind. Also remember that you are in control of your own body! No doctor can force you to stay on blood thinners for the rest of your life! You are the one who has to make that decision. I would listen to everything your doctor has to tell you and then make an informed decision. I hope this helps you some. U hope you feel better!

Sorry for all the weird typos. I can't see well tonight.

Jeremy,
Can Hughes be tested for while on a thinner? Or is it one of the tests you have to wait to be off of thinners first?

Such inquiries come up often, so it appears you have some company out there.
http://www.dailystrength.org/c/Pulmonary_Embolism/forum/19480557-lupus-anticoagulants
http://www.dailystrength.org/c/Pulmonary_Embolism/forum/19310429-anyone-antiphospholipid-syndrome

Hughes Syndrome can be tested for while you are on blood thinners, The tests are reliable even if you're on Warfarin.

I am grateful that you shared. Truly.
I am still processing. So much information. Other things are coming to the surface now, too. Possible autoimmune connections.

Here is a good source of information regarding APS that you may find helpful:

http://www.apsfa.org/faq.htm

As far as testing while on Coumadin or Heparin:

"Patients on heparin or heparin substitute (such as hirudin, danaparoid, or argatroban) anticoagulation therapy may have false-positive results for lupus anticoagulant. Warfarin (COUMADIN) anticoagulant therapy may also cause false test results if levels of coagulation factor II, VII, IX and X are significantly decreased. If possible, lupus anticoagulant testing should be done prior to the start of anticoagulation therapy" also "False-positive test results may be seen in people who take drugs such as quinidine, procainamide, phenytoin, and penicillin" (see: http://labtestsonline.org/understanding/analytes/lupus-anticoagulant/tab/test/)

if the patient had already started anticoagulant treatment, specialist will waiting several weeks until they have completed their treatment before testing for APS or the Protein Deficiencies because of the reason stated above.

It should also be noted, that a single test should not be the deciding factor as to whether a person has APS. A follow on testing 6-8 weeks after the intial test should be taken and results compared. (see: http://www.genome.gov/17516396)

The Lupus Anticoagulant cannot be accurately tested for if you are on blood thinners. That is why they test for other Antibodies. The Anti-cardioliphin Antibody test and the Anti-beta 2 Glycoprotein Antibody tests are accurate even if you are on blood thinners. Most people wither have the Lupus Anticoagulant and none of the other Antibodies, or they have one of the other two antibodies and not the Lupus Anticoagulant. Some people have all three antibodies present. I have tested high positive for Anti-beta 2 Glycoprotein Antibodies twice. A Lupus Anticoagulant was detected on the DRVVT - The Dilute Russell Viper Venom Time, but it is not considered valid due to the presence of certain blood thinners like Heparin and Warfarin. Since I tested positive for one of the other three Antibodies, there is no need for me to go off of blood thinners to re-test. I have tested 98 percent high positive a two years ago, and I have tested recently 85 percent positive. Both tests were performed a separate tomes by separate laboratories. I hope this helps some.

What I meant to say is that some people will test positive for (LA) and not the other two Antibodies, or they will test positive for Anti-cardioliphin Antibodies, or Anti-Beta 2 Glycoprotein Antibodies and not the Lupus Anticoagulant. I tested a high positive on two separate tests performed over a year apart and by different laboratories. One test was performed by Quest Diagnostics and the other test was performed by LabCorp. Each individual laboratory uses their own criteria to test for the presence of a Lupus Anticoagulant as well as other antibodies. There may be different results based on what laboratory performs the tests I'm sorry for all of the typographical errors in my previous post.

I forgot to add that in the note my new Hematologist/Oncologist wrote to my primary care doc stated that people with APS Antibodies should not be put on any of the newer blood thinners. He said there is no way to monitor the therapeutic level of anticoagulation. I know this is only my doctors opinion, but he was adamant about me only being treated with Warfarin and with an INR above 3.0. I know they way I deliver information might not always be clear. I'm not that good of a typist, but I mean well.

RMB, I know that website for Xarelto is a law firms site. I might try and dig up some better information about Xarelto. I was mostly directing that information to my fellow APS patients. APS/Hughes Syndrome is an entirely different animal than the other thrombophilia's. Please correct me if I am wrong on any of this, but the Anticardioliphin Antibodies and the Anti-Beta 2 Glycoprotein Antibodies are reliable when tested for, even if you are on anticoagulants.

If they only tested people for the presence of a Lupus Anticoagulant, then those of us with the other two Antibodies would continue to go undiagnosed. I believe the Anti-Beta 2 Glycoprotein Antibody tests were introduced in 1994 as a criteria for diagnosing APS/Hughes Syndrome. That is if they are the IGG type. Not the IGA. It's a complicated test battery to analyze. Any how, I hope I didn't post any bad information on this thread. Please feel free to correct me if I am wrong. Also, I believe they are going to discover more antibodies to test for APS in the future, and that some of you guys who do not have a clotting disorder might have APS Antibodies that have not yet been discovered.

Hi Jeremy, I just meant on that other thread that anyone considering switching to Xarelto who is looking for information should research it using medical or science websites and publications, not websites where the objective is to get people to take legal action. I imagine too that most people will discuss with their docs the best course of treatment for their situation.

Sorry, I posted the Xarelto rebuttal on the wrong thread. I know sometimes I get my info jumbled up. I am a very lazy researcher. I also made a mistake about the Beta 2 Antibodies. They were added to the APS/Hughes Syndrome laboratory diagnostic criteria in 2004.