Do you automatically get tested for APS if you have a clot ?

Hi I am wondering if the doctor's automatically test for APS if you have blood clots ? I have had SLE for 14 years , I had a dvt in my brain 3 months after a brain tumour op , had a massive seizure which I think was a mini stroke then was told I had the clot and was put on warfarin which was stopped after 18 months even though the clot was still there and always will be . I got another large clot in my groin when in hospital recovering from meningitis and so was put back on warfarin for life . Noone has ever said I have APS but I have read about some of the symptoms and think I might have it I am particularly worried about bad memory and brain fog . Warfarin clinic just have me down as recurrent dvt . I did always have a lot of headaches but for the last few years haven't really suffered and was wondering if they have gone due to warfarin although warfarin nurse said warfarin would not stop headaches I heard it can if they were caused by APS. Also I believe it is common in lupus patients or people with other autoimmune diseases . Any advice would be appreciated, I am going to discuss this with my gp on Dec 1st mainly to check if I have ever been tested for it .

7 Replies

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  • In Australia you are tested automatically for at least a couple of the tests and if one of them is abnormal they proceed further especially where there is no obvious reason for the dvt or because of its location or young age. In your case it sounds like they put it all down to surgery issues.

  • Hi , I have argued with them that both clots were provoked, the first one was like you say surgery related probably and the second was after being in a hospital bed for weeks not moving when I was recovering from meningitis , I was in intensive care for 2 weeks and spent another few weeks in hospital after that . They insist I need to be on warfarin for life which makes me wonder if they suspect APS but you would think they would check especially as I have SLE , maybe they have I just need to find out , thanks for your reply .

  • Hi,

    I wonder what INR-number they have put you on as to your Warfarin?

    You say the headache was better after Warfarin but you have got one more DVT. So if you use Warfarin the dose may not be enough as you get symptoms when anticoagulated.

    Let your Dr test you for the three antibodies, Cardiolipin, Beta-2-Glycoprotein 1 and Lupus Anticoagulant.

    Also look for an APS-Specialist as they say you have got Lupus. He may even take more tests.

    Read also "Sticky Blood Explained" by Kay Thackray. She has got APS herself and writes about the different symptoms we have. It is a good book to understand APS better also for relatives.

    Best wishes from Kerstin in Stockholm

  • Thank-you , my target INR is 2.5 they say , I was taken off warfarin 18months after my first clot , was put back on it 3 years later following the second .

  • I'm interested that you say you HAD Lupus for 14 years as if it's gone away! Lupus is an autoimmune disease and you would have it for life. APS can and does run with Lupus but you can also have sticky blood with it. Warfarin will obviously thin your blood so if you had migraines as a symptom of your too sticky blood (the brain does not cope well with the sludge) then it's not surprising the headaches will go if the blood is thinned wether that is due to APS or Lupus so your nurse is wrong I'm afraid.

    If you are on warfarin for life then you are getting the right treatment, what worries me is if the INR is high enough if you don't have the correct diagnosis so it is important to get that right. People with Hughes/APS tend to have an INR of at least 3-4 if they have had a previous clot like yours in an artery so please ask your Dr to test you.

  • Hi thanks I will do , it actually says in my post I have had lupus for 14 years , I do still have it , l have arthritis involvement, level 3 nephritis, rash and the usual fatigue and of course blood clotting , I am glad you say the warfarin nurse is wrong , she is the most annoying woman she didn't even know when I had been diagnosed with SLE, she said you were diagnosed in 2011 , when I said no i was diagnosed in 2002 she just said OH . They say my target INR is 2.5 , I have made an appointment with my gp for Dec 1st to discuss this and other issues.

  • I think in Australia if you have had a second clotting event then you would be put on permanent anti-coags regardless of the cause, and possibly that is what has happened in your case. I am on Xarelto so I dont have a goal INR but when I had the dvt it was 1.1

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