I'm curious as to what other people's Anticardiolipin and Beta2glycoprotein numbers are...

[GraceEllie2012]

I know that they can change all the time. I am still trying to really learn about APS and good information has been hard for me to come by. My blood was just checked in July right before my move over here to Germany and Anticardiolipin was at 28. (The lowest it has been since my diagnosis!) and beta2glycoprotein was 35, also lowest since diagnosis. Less than three months later, my new hematologist here ran the tests and they were 300 something and 200 something. (I can't remember exact right now). Is it common for them to get that high?

My first thought was that they measure differently here, but the hematologist said he checked and it's the same measurement as in the states.

Thank you in advance!

[Lure2]

The most important thing is to get a diagnoses. Also very important to have an "APS-doctor".

I have had all the four antibodies that has to do with APS in 12 years time. Always positive. I have been told that it is not so important how many it is. Do not worry about that just be sure you get a doctor that really knows this rare and sometimes complicated illness. There are so few of them.

For me it was an enormous difference when I started warfarin at last. I could read again for a change among a lot of other positive things.

I have read 6 books about Hughes syndrome. Professor Graham Hughes is a sort of "Godfather" on this site. I think "Sticky Blood Explained" by Kay Thackray is the one to start with. You must be able to find it in Germany. I am myself from Sweden.

Take care and do not worry about your antibodies.

Kerstin in Stockholm

[GraceEllie2012]

Thank you so much for your reply. I have seen a hematologist and a rheumatologist since I've arrived, but it is clear neither are experts with this illness. Also, I was on warfarin for the past several months, but was recently pulled off and put back on enoxaparin injections twice daily due to not being able to get my INR stable for several months.

I feel I should also maybe be taking a baby aspirin as I used to when I was first diagnosed, but my hematologist recommends against it.

[GraceEllie2012]

Also, when I was first diagnosed I believe I tested positive for all four of the antibodies as well. My lupus anticoagulant was negative for a couple testings, but I believe was positive again this last round. I will have to look back at my paperwork.

[Lure2]

Hi again,

If you take warfarin then you can not rely on the LA-test. They never take it om me after I started warfarin 30 months ago.

I Think that you should find an "APS-doctor" as soon as possible. I can not help you with this from Sweden.

A hematologist and a Rheumatologist are the two types of doctors that can have the best knowledge of this illness. Perhaps they know more than you think they do.

Take care

Kerstin in Stockholm

[GinaD]

My rheumatology factors went from low normal to high normal for years. The I tried a gluten free diet. All of my Ig tests went to middle of normal within 6 months and have stayed there ever since.