Hughes syndrome/APS

[Gregstock]

New to this site. I have a positive diagnosis for APS also called Hughes syndrome.

[MaryF Administrator]

Hello and welcome, everybody on here has Hughes Syndrome, you will learn lots by reading the various posts and answers. Where are you located? MaryF

[Gregstock in reply to MaryF]

New York State

[MaryF Administrator in reply to Gregstock]

We have lots on here from the USA and several from New York, I am sure they will say hello to you. MaryF

[Gregstock in reply to MaryF]

Thank you MaryF

[Heidi-B in reply to Gregstock]

Welcome! I am also in NY State

[Gregstock in reply to MaryF]

Hello all in this group. I have been following this group for a while

I'm wondering why the target INR for APS is lower in the USA than in Europe as per my reading .

My target is 2-3. I have APS and had a stroke in Nov 2015 that caused vision Loss. MY INR was stable at 2.8 to 3.2 for several months after the stroke. This was with the Coagchek electronic device at my clinic. I felt pretty good for about 1.5 years after the stroke. I am cinsistant with my Vit k and my Coumidin doses.

Resently I have been feeling poorly with fatigue confusion poor memory and balance problems

The three times I have had blood drawn and lab tests the INR was lower than Coagchec at the clinic. 1.8 and 2.0 with same dose and diet with test 1-2 weeks apart.

They change my dose of Coumadin from time to time bring Mr INR in target range when its high My last INR was blood draw was at 2.0 so the clinic increased my dose back to the same amount that I was on for months which provided INR of 3.0 to 3.2.

My next blood draw is this week. Very courious to learn the number

I have discontinued the COAGCHEK at the clinic and demanded lab tests for all future tests

Any advise will be appreciated.

Thank you

[Lure2 in reply to Gregstock]

Hi Gregstock,

You have now answered an old question and I think you have a very important issue so I suggest you put a new fresh post with your question about the CoaguChek XS and lab-test values.

All the same I want to ask you some questions;

Do you have a CoaguChek XS at home and test your INR?

How often do you test your INR at the lab?

You have APS and have had a stroke and then should have a higher INR than 2.0 - 3.0. That is too low and no wonder you have a lot of neurolgical symptoms.

So I wonder if you have a Specialist of HS/APS as he/she does not know you need a higher INR to feel safe for a new stroke?

We need a Specialist who has had patients like us before who understands this tricky illness!

I test with CoaguChek XS at home every second day as I have to follow my INR closely because I am triple-positive with high titres since 2002.

My therapeutic level is an INR between 3.5 - 4.0 and I feel best at 4.0.

My CoaguChek-value (fingerprick) is much higher than in the vein at the hospital-lab. It is always the same difference between the two readings, so I have to lower my number I get every morning, to know my REAL INR-value if I did test at the lab. (The value that COUNTS is the lab-value in the vein.).

Hope that helped you to ask your question better now with a new post.

Best wishes from Kerstin in Stockholm

[Lure2 in reply to Lure2]

Hi Gregstock,

If my CoaguChek value is 5.0 my Inr in the vein at the lab might be 4.0

Kerstin

[Gregstock in reply to Lure2]

Lure

I do not have a coagchec device. I would like to have one but the cost is high and not sure which one to consider

I was being tested by a nurse at the clinic in my hospital with a coagchec. I just changed to blood draw testing for fear of the finger prick devices accuracy

When I am in range 2- 3 they allow me to go as long as 3 weeks for my next test . When I'm out of range the want me back in 1 week.

I have ask the nurses questions about INR targets and they all say the same thing target should be 2-3.

I do not have a specialist as a provider. I have seen Hemotoligist's and Ruemotoligist none of which seamed to understand APS very much.

I'm searching for a doctor who is a specialist near Binghamton NY but not having any success.

Thank you

[Lure2 in reply to Gregstock]

Hi Gregstock,

I think you should put a new fresh question (this one is 7 months old) and tell us you have difficulties with finding a Doctor not too far from where you live, who is a Specialist of autoimmun illnesses and can handle Warfarin for us in the right way.

Best to you

Kerstin in Stockholm

[Wittycjt]

Hi Gregstock and welcome. I am Cindy and I am from NJ. Do you have a Hughes/ APS "Specialist"? if you tap on my title-name you can see my profile/ story

[Nanny23]

Hi Gregstock. Welcome to this wonderful site. I am also from New York

[itasara]

Hi Gregstock, Thanks for following me-- (whatever that means!) I actually do not know what Hughs syndrome is. Can you enlighten me? Maybe I know what it is but it just doesn't ring a bell. I live in upstate NY.

[prj789]

Hi Gregstock. Welcome to the most helpful, supportive, knowledgeable and understanding group of people I've ever known in helping with APS. You will find this site comforting and your "go to" for questions in your journey with this blood clotting disease. Welcome friend!! I live in Texas.

[ndstephens49]

Hello Gregstock. Have APS , CVID, vasculitis, heart failure. I am in West Virginia. Nancy

[Wittycjt]

What can we help you with Gregstock