Lupus anticoagulant : Hi. A few years ago i was... - LUPUS UK

LUPUS UK

30,066 members26,614 posts

Lupus anticoagulant

xSarahx profile image
3 Replies

Hi. A few years ago i was tested for lupus SLE as i have majority of symptoms. Turned out it wasnt lupus SLE it was in fact lupus anticogualant. I was changed contraceptive pill and told to stop smoking to decrease chances of blood clots. I cannot find much information on lupus anticogualant except leading me to APS. I now see APS stems down to around 5 different names including hughes syndrome and lupus anticogualant and a few more. I am just concerned because if i have APS then im high risk for catching this coronovirus. Are you able to explain to me what lupus anticogualant actually is and if im any risk to ifections etc as its antibodies. Thank you

Just spotted old messages and they are truly appreciated but right now I’m so confused and wondering if anyone can shine any light into my question, that doesn’t lupus anticoagulant mean I actually have APS? Thanks again folks

3 Replies
KellyInTexas profile image
KellyInTexas

Hello Sarah,

You might consider consider joining Health Unlocked Hughes syndrome- APS support.

Admin can help you a great deal with understanding the tests, criteria, and publications if you have been recently diagnosed.

Many forum members can help as well.

It’s an auto immune disease whose antibodies cause the blood to become too thick, or sticky, and therefore pro thrombotic.

If you have met the:

1. Lab criteria for antibodies - (complicated)

2. Clotting criteria- had an event - (complicated )

You will need a hematologist evaluate your personal level of anticoagulation needs. ( it will usually be warfarin, but your level of thinning will need to be set by a hematologist.)

I have APS and I’m on warfarin. I can help you understand this medication if you have questions- but I’m sure your Rheumatoligist will Draw a second set of blood work if this was only your first set. If second set 12 weeks later also has come back positive, then hematologist would be consulted?

The lupus anticoagulant ( LA) is the name of one of the tests in the coag panel.

The other two are :

Beta2Glycoprotein 1

Cardiolipin

Sometimes people think they have been diagnosed, when in fact only one of three tests have flagged positive in round one of two required blood draws. I don’t know if this is the case or not . It’s because the name of the test / antibody is so confusing. ( LA) .

xSarahx profile image
xSarahx in reply to KellyInTexas

Thank you so much for all your information. It truly helps. I'll probably call my doctor and ask them to check on screen as I cant find my copy of the test results. They just told me I tested positive in the 2 tests 12 weeks apart for lupus anticogulant x

Jumper99 profile image
Jumper99

Hi Sarah

I have APS and live in the UK.

Lupus Anticoagulant (LA) is a very badly named blood test for APS, nothing to do with lupus.

It is possible to have positive LA tests but not have the full syndrome, you need clinical evidence too. Have you had any clotting problems? But sometimes the doctors actually call the illness ‘lupus anticoagulant’ instead of APS which is wrong. It doesn’t often happen in the UK from what I’ve seen but it can happen.

There are two other blood tests which you should have done too

Anti cardiolipin antibodies (ACA)

Beta2 glycoproteins1

You only need to be positive on one of the tests but it is important to do all three. They need repeating after 12 weeks to make sure they are still positive.

I can tell you that our consultants have told us we are not more likely to catch the virus so we are not in the highest category for shielding so don’t get a letter from the Government. We are however in a higher risk than a person without health conditions so need to be very careful with social distancing and hand washing.

What you most need to do is to somehow get to see a consultant to recheck your bloods and to diagnose you properly and give you medication if necessary.

The Hughes Syndrome group on here is good. But also APS Support UK have a lot of basic info on their website

aps-support.org.uk

You may also like...