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Has anyone had a lupus coagulant test

(26 Posts)
Thomasthetank456 Fri 18-Mar-16 21:21:05

Hi just wondered if anyone has been tested for this and what it means if you have a positive result thanks

loveyoutothemoon Sun 20-Mar-16 17:08:10

Hi I tested positive for this in January. Had another test and waiting on those results.

Means you are at high risk of blood clots .It can be primary or secondary (secondary is when it's as well as something else like lupus.)

Have you had a second positive test? Do you have lupus?

LivingInMidnight Sun 20-Mar-16 19:35:26

I'm lupus anticoagulant positive. You have to test positive twice irc 10 weeks apart.

On its own it doesn't mean much, other than there's a higher risk of clots. You might bruise easily and if you get a cut etc you'll bleed for longer than other people, but that's probably always been the case for you and you just weren't aware of it.

It doesn't mean you have lupus. If you've already had a thrombotic event (blood clot, late miscarriage) it may mean that you have Antiphospholipid syndrome. If you do, you'll be put on blood thinners.

I don't have Antiphospholipid syndrome, my rheumatologist told me to take children's aspirin every day. I don't remember to do it very often blush

LivingInMidnight Sun 20-Mar-16 19:40:38

Oh and I don't have lupus! They spent a very long time trying to prove otherwise though, which is why they did the test in the first place.

Thomasthetank456 Mon 21-Mar-16 14:26:49

Thanks for the replies. I was in hospital with meningitis over Christmas and Drs said that a previous blood test (was having a few a tests a few years ago when pregnant and after as I became anaemic) had showed the lupus thing but I was never told. Having further tests done in April as was told had to wait 12 weeks.

I assume it also showed in tests hospital did they weren't sure if infection was affecting the results.

No ones really spoken to me about what it means. When I was pregnant had a liver problem and noticed then that cuts would bleed for ages and was prescribe Vit K. I put I down to the liver problem and haven't noticed anything since hopeful it's just a glitch.

So it's not something that has any affect on your day to day life?

sephineee Mon 21-Mar-16 14:31:21

I have APS syndrome - I have lupus anticoagulant and another I cant remember the name of (oops).

Having APS syndrome means I have to take warfarin daily for the rest of my life. I had to inject heparin during my pgs and get induced at 38 weeks (but have three healthy children).

I also had an inconclusive test for just lupus at some point in the middle of all the diagnosis/pe issues about 7 years ago. Think that's quite common.

Its still considered quite a new area of science and research, a lot of APS time is focused on miscarriage and pg though.

loveyoutothemoon Mon 21-Mar-16 16:12:36

sephineee how long have you had APS and do you feel better now? What were/are your symptoms? Was was it that made your lupus test inconclusive?

LivingInMidnight Mon 21-Mar-16 16:31:11

moon there are criteria you have to meet to get a lupus diagnosis. The majority of people with sle have a positive ANA though, but that on its own means very little.

If you've not had thrombosis of some sort you don't have APS, it's fairly cut and dry.

HyacinthBouquetNo1 Mon 21-Mar-16 16:52:18

great timing for a thread, I was going to post about APS. I was considering going to my GP and asking about this. I have had the lupus anticoagulant test in the past but don't know the result. I have had MS ruled out, but there is no explanation for the high signal areas on my brain MRI. I have a lot of neurological symptoms and was wondering if I might have APS (maybe a bit of a reach but I am not getting any better and am desparate to find out what is wrong with me). Diagnosed with fibromyalgia but I dont really have pain as such and all symptoms are neurological

Is it so cut and dried re: no clots, definitely not APS? I have had a miscarriage in the past but no clots

LivingInMidnight Mon 21-Mar-16 16:58:36

I'm just copying and pasting the criteria from Wikipedia but:
"Clinical:
A documented episode of arterial, venous, or small vessel thrombosis — other than superficial venous thrombosis — in any tissue or organ by objective validated criteria with no significant evidence of inflammation in the vessel wall, and/or
1 or more unexplained deaths of a morphologically normal fetus (documented by ultrasound or direct examination of the fetus) at or beyond the 10th week of gestation and/or 3 or more unexplained consecutive spontaneous abortions before the 10th week of gestation, with maternal anatomic or hormonal abnormalities and paternal and maternal chromosomal causes excluded or at least 1 premature birth of a morphologically normal neonate before the 34th week of gestation due to eclampsia or severe pre-eclampsia according to standard definitions, or recognized features of placental insufficiency plus
Laboratory:
Anti-cardiolipin IgG and/or IgM measured by standardized, non-cofactor dependent ELISA on 2 or more occasions, not less than 12 weeks apart; medium or high titre (i.e., > 40 GPL or MPL, or > the 99th percentile) and/or
Anti-β2 glycoprotein I IgG and/or IgM measured by standardized ELISA on 2 or more occasions, not less than 12 weeks apart; medium or high titre (> the 99th percentile) and/or
Lupus anticoagulant detected on 2 occasions not less than 12 weeks apart according to the guidelines of the International Society of Thrombosis and Hemostasis."

My rheumatologist called the clinical stuff "thrombotic event". It's a bit of a leap with no confirmed blood work though.

HyacinthBouquetNo1 Mon 21-Mar-16 17:01:38

That is helpful, thanks. I just wonder how amenable my doctor would be to ordering the blood tests. Just something I keep wondering about. I have had soo many tests, but not really any nearer to an answer.

LivingInMidnight Mon 21-Mar-16 17:04:09

If you have the easy bruising, bleeding longer etc parts of it and the miscarriage fits then it's worth asking. It's a real struggle after a fibromyalgia diagnosis though, they write most things off. Who diagnosed you? If it wasn't a rheumatologist I'd ask to be referred to one now.

LivingInMidnight Mon 21-Mar-16 17:05:06

In my experience rheumatology will do every test they can think of confused

loveyoutothemoon Mon 21-Mar-16 17:18:28

Here's my easy bruising! I only got my finger stuck in a box.

HyacinthBouquetNo1 Mon 21-Mar-16 17:19:48

It was a rheumatologist who diagnosed me, even after he did the trigger point exam, of which i dont have any sore points! He did say my muscles are very weak so tested for hyperparathyroidism, ANa and renal function. As far as i know they are all the tests he did which were normal.

I have seen a neurologist since and he said he did not think that i had fibromyalgia and ordered the brain scan to check for demyelinating disease because of my symptoms. This shows numerous hyperintensities in white matter. Had to have lumbar puncture and visual evoked potential tests which were normal, so discharged from neuro with watch and wait policy.

Briefly my symptoms are
Double vision on looking left
Dizziness
Balance is totally gone
Tingling in face tongue mouth
Headaches
Numb patches
Fatigue
Creeping flesh feelings

LivingInMidnight Mon 21-Mar-16 17:42:27

No trigger points?! That's a huge red flag! He sounds useless.

Have you looked at PoTS? symptoms
You could self test your heart rate.

It sounds like it's nerve/cns related though.

HyacinthBouquetNo1 Mon 21-Mar-16 17:54:30

I dont think i have Pots symptoms. I do have heart probs thou, svt and coronary artery spasm. I used to get palpitations and racing heart but am on Bisoprolol and Nicorandil and have been a lot better for this past year. My heart rate is still bit high but steady with no racing

thatstoast Mon 21-Mar-16 17:58:12

Yes, I had it. I had a DVT after having DS. I was diagnosed with antiphospholipid syndrome. I take low dose aspirin daily. I feel fine day to day but I know someone with APS who has quite debilitating symptoms.

LivingInMidnight Mon 21-Mar-16 18:00:29

It sounds like you're stuck feeling like you have to diagnose yourself because the doctors aren't helping. If you have a supportive GP I would definitely go and talk to them and see if there's anything they can do/somewhere else you can be referred to. You're stuck in limbo sad

HyacinthBouquetNo1 Mon 21-Mar-16 18:07:30

Unfortunately i feel the drs are fed up of me and are at a loss, so i dont bother going back. I try to forget about it and get on with life but its v dificult at times. I had to give up work as unwell. I am just getting over a 2 month episode of visual disturbance dizzines and terrible headaches , i started taking aspirin and am improving but that could be coincidence and i am not sure of the wisdom of taking aspirin long term. Apologies for thread hijack, op

LivingInMidnight Mon 21-Mar-16 19:06:01

Would Charcot Marie Tooth fit?

Yes, sorry op.

HyacinthBouquetNo1 Mon 21-Mar-16 19:46:04

Not sure about that. My symptoms seem sensory mostly. I am not entirely convinced it is not MS. And maybe it will reveal itself in due course, as in a postive lumbar puncture, though i dont want to repeat that experience! Time wil tell i suppose

sephineee Tue 22-Mar-16 10:33:15

I had a massive bilateral pe in 2007/8 (diagnosed and hospitalised in early 2008 but symptoms from autumn 2007 - awful GP!!).

In the investigations that followed I eventually got diagnosed with APS - took a year or so I think but that was partly due to having to organise a warfarin free period to do it in. The inconclusive lupus was straight after the pe and I was told that would have been because of the lupus anticoagulant. Not sure how true that is? The other antibody I tested high for was cardiolipins I think by the way.

In the aftermath of the pe I felt weak and it took my body a while to get used to the medicine and my INR waivered A LOT. Turns out I need a high dose for my body size. I found accepting a life long diagnosis and medicine more mentally challenging than physically challenging when it happened.

Now I am used to the warfarin it is fine, I bleed heavily if I cut myself and bruise easily, need to think and juggle doses if I want to have more than a couple of units of alcohol but it is part of life now.

During my pgs and birth much more of an issue with lots of injections, scans and visits etc. However, all the babies were/are fine!

I would like to try the new drugs as warfarin is a fairly harsh drug but at present I am not allowed them on NHS prescription.

outputgap Tue 22-Mar-16 10:42:57

On the other end of the antiphosolipid spectrum, I only found out about mine due to recurrent miscarriage and several rounds of failed ivf.

It only impacts on my life (thank God) when I'm pregnant. I take baby aspirin and clexane, and also have to take high dose folic acid for mthfr (I may have the letter order slightly wrong!).

Apparently lots of people have it symptomlessly. So testing positive might not mean much, hopefully, if you see what I mean?

sephineee Tue 22-Mar-16 11:10:56

Although my pe (many weeks in hospital and a resulting heart issue for a few months) was a pretty torrid time when I came to having children I was SO glad I found out about my APS that way rather than via the miscarriages many suffer pre diagnosis outputgap.

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