Newly told I have this disease to add to all my other issues

I have followed everything I have been told to do to keep my inr levels normal and I can't seem to stay therapeutic 2 weeks in a row. I have now been hospitalized for the second time for this. This is so hard to manage.

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  • Hi Jane welcome to our Forum. Im so sorry to hear you are in Hospital. What has happened to cause this? People with Hughes Syndrome - and Im assuming you have this? - whose INR are very unstable seem to have the LA antibody, do you know if you tested positive to that one? Perhaps you could confirm you do have Hughes so we can advise you a bit better.

  • Hi and welcome, have they don the 3 tesst for Hughes Syndrome/APS, and taken a family history? Let us know and where you are located so we can endeavour to help with more detail. MaryF

  • Are you Lupus Anticoagulant and have you just started with your Warfarin for Hughes Syndrome? When were you diagnosed; was it by symptoms or by antibodies or both?

    Best wishes from Kerstin in Stockhom

  • Yes i am. Started warifin in February and i found out after being diagnosed with a pulmonary embolism and they could not find where the clot came from, so a hemotologist ran a series of blood work on me to see what could be causing it cause a week after the emnolism i had a stroke. It took over a month for blood work to come back on which i was hospitalized again in February with complications and that's when we found out what I had so i was already on pradaxa amd they switched me to warfarin. But i got hospitalized again 4 days ago and still in hospital now on heperin and warifin to get therapeutic before I can leave.

  • Welcome aboard ( to the boards)! Who is your doctor and where are you in the US?. I try to compile a list of docs that members like so we have a way to refer newbies who need help to helpful docs in the US....

    How are you doing now? Thanks, Cindy in NJ

  • Hi again,

    In which country are you hospitalized?

    It is very important that you see a Doctor who is specialized in Hughes Syndrome and knows how to treat you. We need high INR with this illness as you probably know. I selftest with an INR around 4.0. You must not leave before you are properly anticoagulated and you have been in contact with a Doctor who knows about Lupus Anticoagulant and that it can have difficult readings.

    What therapeutic level are you on now?

    Best wishes from Kerstin in Stockholm

  • I do have a specialist he is the one that detected i had it before i got my results. I am in the United States. My inr is only 1.9 my ptt is 54.9.

  • Janet, welcome! I too am in the states, DC to be exact. I was diagnosed in December 2005/January 2006. My INR yo-yoed constantly. I had a very difficult time staying in the target INR range for myself despite keeping a very consistent diet. The hematologist's office that was managing my care initially had a pool of nurses who'd respond to my lab work. If I was like .1 off from my target, they'd change my dose of warfarin and cause the yo-yo effect. I switched hematologists and have been consistently in my target range since. My current doc will tell me to eat a salad if I'm slightly elevated with my INR instead of changing the dose. Try to be patient. For some of us it takes a while. My doc also said that hormones can affect levels during "that" time of the month.

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