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

[Janetorlando9311]

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.

[MaryF Administrator]

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

[Lure2]

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

[Janetorlando9311]

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.

[Wittycjt in reply to Janetorlando9311]

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

[Lure2]

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

[Janetorlando9311]

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.

[Holley]

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.