Lupus Anticoagulant Confusion

[lormiccro]

I'm new here, just hoping for a bit of advise. I was diagnosed with SCLE last year via a biopsy & started on hydroxychloroquine for the summer. After a couple of weeks I had my clotting factors checked & was found to have a positive lupus Anticoagulant all other bloods were normal. I stayed on the hydroxychloroquine until November. I'd had joint & muscle pain for as long as I could remember but was surprised at having such a big improvement in these symptoms while taking the hydroxychloroquine. Nor did I have any migraines, I've been having those since my teenage years. I was referred to a rheumatologist in January after joint & muscle pain crept back. Restarted on hydroxychloroquine with repeat bloods. All normal except 2nd positive lupus Anticoagulant. Referred onto a haematologist. He decided I should have a 3rd lot of bloods processed at a different laboratory. These have come back as negative for lupus Anticoagulant. I am confused as to how this will effect me now. He was sure they would come back positive for a 3rd time. I have no other aps symptoms.

[MaryF Administrator]

Hi there and welcome, it is possible to go in and out of positive testing, it is great that the migraines settled down, some of us also do well being on a small dose of Aspirin, I take 75 mg twice a day on a full stomach, some take only one, but you need to ask about this when you speak to your consultant, alongside making sure your vitamin D, B12 Iron and Thyroid is tested alongside the other tests. Great that the Plaquenil has calmed things down a bit, it is helpful to many people, I can't tolerate but my daughter does well on it.

DId they do all three tests for Hughes Syndrome/APS or just the test you mention?

MaryF

[Yllek]

Hi my blood tests were positive, negative then positive. I've had mini strokes and a spinal stroke and definitely have APS even though I had a negative test once.

Hydroxychloroquine has helped my joint pains and I'm even negative for lupus! Dr said I have lupus like syndrome.

Take care.

[lormiccro]

Thank you for your reply. Yes I'm back on the hydroxychloroquine 200mg per day. I'm waiting for an appointment to go back & see the haematologist to discuss these 3rd set of bloods that were done via a different lab. As far as I'm aware it's just the lupus Anticoagulant that came back positive. I know my vitamin D is fine but as for what other tests have been done I'm not sure. I know my maternal grandmother died of a stoke, it's only recently I found out she had many TIA's preceding her 2 big stokes. It was a long time ago & I was away at uni at the time, so didn't get to find out all that went on. My other grandmother died of a massive heart attack. I've suffered no miscarriages in my life & have had two amazing kids & no DVTs of any kind. But Nor do I want to wait around to get one so some doctor can tick a box on his sheet. The whole thing terrifies me. They've been digging around to see if I have any systematic elements to the lupus & side swiped me with this. I never used to get stressed at getting a headache or migraine, now I'm left wondering if I've got anything to worry about.

[Lure2]

Hi and welcome to our friendly "club"of Hughes Syndrome/APS!

As Mary says antibodies go up and down. When you have had 2 tests of Lupus anticoagulant positive within 12 weeks you should have a diagnose of Hughes Syndrome/APS.

I agree with APsnotFab as I do not know either why you should test the 3rd time as you are diagnosed already.

As you also have a familyhistory of Hughes Syndrome you should now look for a Specialist who is specialized in autoimmun illnesses. Sjögrens, APS, Lupus and Thyroidea illnesses are like "cousins" and can go hand in hand. Then if is vital to have a Specialist who can distinguish between the bloodtests and symptoms and finally give the proper drugs.

We need for Hughes a very high INR (if we have Warfarin) as we have very thick blood and do not bleed often but more often clot. Anticoagulation is the key to APS.

Good luck with this!

Best wishes from Kerstin in Stockholm

[jetjetjet in reply to Lure2]

Kerstin-- We can be know as { "THE SLUDGE BLOOD CLUB " !!! }

Doesn't that have a ring to it ??

[Lure2 in reply to jetjetjet]

Hi Jim,

Absolutely!

For the moment, as I do not wear my weddingring anymore (I am happily divorced), I wear a gold-necklace around my neck with a warning-sign about using ratpoison!

You and me could wear a ring of triplepositive over 60!

Ha Ha!

I like your humour so much!

Kerstin

[jetjetjet in reply to Lure2]

It makes me happy That I make you HAPPY !!! BIG SMILE AND HUG !!

C&J

[jetjetjet in reply to Lure2]

I have my USB port on my Dog tag and also a separate stainless dog tag but i can only list 1/2 of my disorders i I ran out of room !!! LOL

[blizzard2014]

The sticky blood brigade. Hughes Syndrome Comrades. The sludge blood brothers!

[blizzard2014]

Check it out now, the sludge blood brothers. Right about now, the sludge blood brothers! lol