More information about the accuracy of Anti Beta 2 Glycoprotein antibodies and their role in the diagnosis APS.

Here is another study that shows that Anti B2GP1 antibodies are a more specific and reliable test for diagnosing Hughes Syndrome/APS. It is a short read but it is very informative. I know there's been a lot of confusion surrounding this particular test when it comes to the diagnosis of Hughes Syndrome/APS.

I hope this helps some of you understand your own test results a little bit better.

Here is the link: focusdx.com/focus/techsheet...

[Manofmendip]

Thanks for posting this.

Dave

[lorac1]

Hi Sirclotsalot. I think that it does help our understanding, but does it help the specialists? So many appear not to recognise it.

[Hidden in reply to lorac1]

I think doctors in general need to get their acts together. There also needs to be a more streamline process for diagnosing people with Hughes Syndrome/APS. More lives can be saved if we can get all doctors on the same page. There are more precautions that need to be taken by doctors when we have this disease. Even simple procedures such as stenting at vein can turn disastrous for some of us. I just had my doctor's office send over the results of my last INR. It is 3.7. They're all freaked out trying to get me to skip two days of Warfarin. I'm not worried about it at all. That is a perfect level for me. They do not understand this disease here in the United States.

According to that article the Anti B2GP1 antibodies are a very strong predictor of thrombotic activity. Doctor's need to all be on the same page. Also, there is still a battle going on between my Rheumatologist and my Hematologist about whether or not this disease is merely a blood disease or whether it is an autoimmune disease. We the patients get caught up in the battles between our Doctor's and their personal opinions and egos. It's the patients who suffer do to a systematic lack of understanding of Hughes Syndrome/APS. I never knew I needed to have a higher intensity INR when my first Hematologist tried to explain the disease to me. The second Hematologist is the one who wrote a letter to my GP telling him that my INR needs to be kept between 3.0 and 4.0, and that it should never go under 3.0. My GP still tries to fight me on this telling me I'm going to bleed out. I'd rather have dangerously thin blood than have my blood clotting up.

I hope Doctor Hughes will get his colleagues together and streamline the diagnostic criteria for this disease. Perhaps GP's all need to take an extra course to learn how to diagnose and treat Hughes Syndrome/APS. I had to learn everything about this disease by researching it on the internet and by coming to this site. The other clotting diseases like Factor 2 and Factor 5 Leiden are much different as they are just genetic mutations - they are not living antibodies that are attacking the body and causing the blood to become abnormally thick. I also have Factor 2 which carries a very low risk for thrombosis. I hope this disease gets taken more seriously in the years to come. I will continue to do my part in informing Doctor's and patients about this disease.

[Lure2 in reply to Hidden]

Well said!

Kerstin in Stockholm

[Kate_clot]

Thanks. Useful information.