Lab results

[Daisyyellow]

Hi - I’ve posted recently about strongly positive Antiphospholipid antibodies. I just wonder I’d someone could interpret figures at all?? I’ve gone from double positive to triple positive. Can’t work out the lupus one but my anticardiolipin is 403.3 and anti beta glycoprotein is 890.3 no idea what they mean! Any insight gratefully received!

[CO41]

I’ve recently become triple positive too. I’m not sure how to interpret the figures. I was told that as I was triple positive I had APS. Your treatment will depend on whether you’ve had previous blood clots. I had a DVT 17 years ago when I was just 24 and a superficial clot in November so because of this I’m now on warfarin. Prior to this I was just taking aspirin. I hope this helps. Maybe someone else can give more advice!

[Lure2]

Hi Daisyyellow,

If you are triple-positive you have also tested positive to Lupus Anticoagulant. That is not the same asLupus (you are also a member on the Lupus site). I guess you know that.

[Daisyyellow in reply to Lure2]

Yes thank you - it’s confusing! I’m on lupus site as they think that is evolving - I’ve got a diagnosis at the moment of undifferentiated connective tissue disease. On hydroxychloroquine. X

[Lure2 in reply to Daisyyellow]

Who gave you that diagnose? It is important that you see a Specialist now. I am also wondering if you have ever had some sort of TIA or smallstroke. Fall suddenly to the ground without any cause, lost the vision in one eye for some minutes? If so you could tell your Specialist that. Usually they want proof like a MRI etc.

Sometimes the neurological symptoms improve with only a Baby-Aspirin each day. But later on and for some of us that is not enough, as Baby-Aspirin is not an anticoagulationdrug.

I remember that prof Hughes (when for example the patient perhaps had all three antibodies positive) made a trial for a couple of weeks of LMW Heparin (a sort of Anticoagulation drug) to see if the neurological symptom s like headache, dizziness, blurry vision etc improved. If they improved or even disappeared he started the patient on Warfarin.

[Daisyyellow in reply to Lure2]

Thank you for reply. It was a rheumatologist who has diagnosed connective tissue disease. I get loss of vision but through migraines which can be quite bad. Headaches and dizziness are bad. Numbness in my hands too. My vision is always quite blurry despite recent optician appointment. I have not being diagnosed with APS because I’ve not had a clot but my levels are really high and this is what is worrying me, I’ve also gone from double to triple positive recently. I’ve had MRI which has shown no signs of TIA. I’ve a telephone app with a private rheumatologist over next couple of weeks. Is there anything useful I should be asking him? Thank you for your help

[Lure2 in reply to Daisyyellow]

You should only talk to a Doctor who is knowledable of autoimmun illnesses and works daily with these people otherwise you will not get the treatment you quite obviosly need. This is very important.

Your diagnose can be correct but you need to try anticoagulation for your APS. I am not a Doctor but I have heard a lot of other APS-sufferers and I talk from own experience

I can tell you that they have never found anything on me on Scans etc as it is about microembolies and microclots and they are too tiny to be seen on any Scan or at least it is exstremely difficult to see them. There are different sorts of Antiphospholipidsyndrome. I am primary APS (only APS) but perhaps you also have other autoimmun illnesses. SLE is very usual.

It is very difficult to diagnose and separate these illnesses that go hand in hand and have so many symptoms in common. Therefor you need a Specialist.

I lost the vision in the half part of my right eye for some minutes (Amaurosis Fugax). When the Neurologist, I saw at that time (10 years ago) heard that, she suggested I should try Warfarin. I thought that was some rat poison and I was very doubtful. Finally I agreed to start Warfarin as my Hematologist said I had to have it and no more neurological and vision-problems. The problem is our thick blood. but

I do not think you should be worried about your high titers. I have also had very high titres for so many years but I keep anticoagulated. I wish you could see prof Hughes who did a trial of LMW Heparin for some weeks and if the patient had less symptoms he started Warfarin.

Did your symptom get better after the Baby-Aspirin? That is an antiplatelet drug only.

Good luck to find a Specialist at last!

[Daisyyellow in reply to Lure2]

Thank you for your advice and insights. To be honest I don’t feel much better with baby aspirin and not sure if you’ve seen my pic on the lupus site but that’s what aspirin seems to do to me - extensive bruising! I think the specialist I’m seeing does specialise in APS and lupus so I’m hopeful! Thank you again for your time to reply x