Very odd

Well After my last post I got a call from the hospital saying the doctor has looked at my bloods & wants me to do all three tests for sticky blood! I told her I you can't test LA on walfrin, I've been off of it for just over a week so want to make sure it's out of my system before the blood tests , they are posting it out to me, I seem to have a bad reaction to medication so I asked if I could stay on clexene with I'm fine with , she asked me if I realised how expensive it is!!

She said I can stay on it until July but then apixiban which I don't want ! After the others! Also not suitable if it's Hughes , you wanted to share hopefully the start .

9 Replies

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  • Hello Barbie

    I'm with you about Heparin, I am on Fragmin and I'm so much better than I was on Warfarin. It might be more expensive but I have not had any clotting incidents or days in hospital since being on it.

    Dave

  • I have such a bad reaction with so many drugs that I will have such a fight , that's so good to hear about how well it works for you gives me hope ,

    Thanks Dave

  • I do not understand.... have you been without anticoagulation for 1 week to get a test for Hughes Syndrome?

    Then they want you on Apixaban!? I wonder if it is approved for those over an INR of 3.0 where you live? I am on Warfarin here in Stockholm but I think the oral drugs have no antidot llike K-vitamin?

    You can have a positve diagnose of Hughes Syndrome with only one of the three antibodies positive if it is taken after eachother with 12 weeks between them.

    As Dave says it must be more safe with LMW Heparin (Fragmin) but also more expensive. If you can afford it you should take Heparin that is what I have learnt.

    Take care!

    Kerstin in Stockholm

  • Hello , no they were trying to change me from clexene to walfarin but I react to everything , had an awful reaction to rivoxaban all of my body swelled including my legs awful pain & my throat was swollen , I've been off walfarin for a week still on clexene so hoping to have LA test & the others now , it's been a huge fight , just praying I can stay on clexene don't want to risk anymore awful affects , will see what results say

    Thank you for your kind response Emma

  • You may have to fight your case for the medication which suits you the best. MaryF

  • Hi Mary I'm just so pleased I'm getting the tests, worrying that I had to tell them what I could & couldn't be on , do you know how long it takes for walfrin to be clear so LA test is right? It's been a fight this far

    Thanks Emma

  • APsnotFab how long should the window be? MaryF

  • Best to leave 10 - 14 days from stopping warfarin. Make sure you let them know you are on LMW Heparin though as it can have some affect on the result. Its important that they do the anti-B2GP1 test as this is NOT affected by any anticoagulant.

  • They know I'm on clexene , I thought it was ok, they are doing the other one as well , thanks for your help

    Emma

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