Has anyone else been diagnosed with APS with just a high level of Beta 2 Glycoprotein IGA and a DVT. Read conflicting reviews in reports.

[dogtail]

Beta 2 Glycoprotein IGA

[Lure2]

I have learnt it says "Beta2Glycoprotein 1" about that antibody which I also have.

There are IgG, IgM and lso IgA different "types" they messure. I am positive to all three. Positive for them as to the "Kardiolipin-antibody" also.

I am not a Doctor and do not know much about it. I have had those for over 16 years now in high titres and also the other two antibodies we have (Triple-positive). I am 74 years of age.

When you have APS you can get a DVT.

I am not sure I understand your question about "conflicting reviews in reports".

Please tell us a little more about it.

Best wishes

[dogtail in reply to Lure2]

Lure2- some reports I have read say the beta 2 Glycoproteins IGG and IGM should be taken as an indication of APS - but the Beta 2 IGA , which Is my only positive test at 154 ( which is quite high) - they are not sure if it should be used in the clinical suspicion of APS.

Another report states that a strong relationship WAS demonstrated between increased IGA anti- beta 2 GPI antibody levels and a history of venous thrombosis, thrombocytopenia , heart valve disease, livedo reticularis and epilepsy and that it should be used in the diagnosis.

Just curious to know if anyone else had been diagnosed with APS- with the only positive being the Beta 2 Glycoprotein IGA.

Hope you are having a good evening!

[Lure2 in reply to dogtail]

I had in 2017 (among others) when they checked a lot of analyses;

S- Kardiolipin IgA Multiplex 94 (should be under 20)

S-Beta2GP1 IgA Multiplex 86 (should be under 20)

S-Beta2GP1 IgM Multiplex > 160 (should be under 20)

At first they did not look for "A" but I have been positive now 16 years.

I suggest you ask your Specialist for one more test. If you are once diagnosed they must not take the diagnose away and absolutely not stop anticoagulation. I do not care so much about all of my persitant antibodies but I know they say that when you have many persistant antibodies all the time you are at a greater risque for thromboses.

I live in Sweden.

[dogtail in reply to Lure2]

Thanks!!!

[GinaD]

The coagulation cascade is very complex and not totally understood as yet. But a standard diagnosis of APS is made when one of 3 tests is positive and remains so over a 6 week period accompanied by a clotting history, such as DVTs. The diagnostic tests are: cardiolipin antibody, beta 2 glycoprotein and the ANA test. But the coagulation cascade is AND the autoimmune reactions are quite complex and not entirely understood as yet. Test result s can fluctuate from positive to negative for unknown reasons. . Some doctors point to these fluctuations as evidence that the tests are not definitive. But for most hematologists and rheumatologists, as well as many patients who suffer from this “supposed” disease, the relationship is clear. Clotting incidents plus positives on one or more of those tests remaining consistent over 6 weeks or more =s a diagnosis of APS and the necessity of life-long anticoagulation treatment to keep more clots from occurring.

[Jumper99 in reply to GinaD]

Gina, ANA is not a test for APS, it’s a test for lupus, among other things. The third test is the very badly named Lupus Anticoagulant abbreviated to LA.

[GinaD in reply to Jumper99]

Yes ANA is a test for lupus. but positive ANAs also point to APLS . Sticky blood was often seen in lupus patients back in the dau, but now is recognized as not just an additional symptom in some lupus patients, but can also be a stand alone syymptom and diagnostic test for APLS.

[Jumper99 in reply to GinaD]

I don’t know if you are right about ANA being helpful in diagnosing APS.

But the three tests specific to Hughes Syndrome are

Anticardiolipin Antibody, Lupus Anticoagulant and anti-beta2-glycoprotein-1. These are the three tests we refer to when talking about being tested for Hughes Syndrome.

If you don’t believe it then check the GHIC or APS support uk or APSFA websites.

[GinaD in reply to Jumper99]

My bad. I ws confusing the LA and teh ANA tests — probably because in the past i was positive for both. My theory about testing confusion is that APS is a “basket” diagnosis of people who have immune reactions against various dominoes in that multi-complex, coagulation cascade. Someday, this will be figured out.

[Jumper99 in reply to GinaD]

It’s all too easy to get confused with this illness 😟 I hate that it scrambles my brain. I hope they can figure out these illnesses soon, I feel APS, lupus, Sjogrens, ME, Fibro must all be linked somehow.

[MaryF Administrator in reply to Jumper99]

The Fibro bit is a collection of symptoms, often the patient will have Hughes Syndrome/APS, Sjogrens and a Thyroid problem, also low D, low B12, low Ferritin and low Folate, and medical trials coming out of Holland show that a lot of patients with ME of CFC have not enough T3 thyroid hormone! MaryF

[KellyInTexas Administrator in reply to MaryF]

What is ME and CFC?