Hello!

[Mermaidatheart]

I'm new here. I am a healthy 51yr old female that suffered a stroke May 2018. I was diagnosed in June 2018 as having antiphospholipid syndrome. I am now a lifetime user of warfarin. I look healthy by all who see me, but I still have some deficits to work out. I am just looking for a community of people with similar diagnosis.

[HollyHeski Administrator]

Welcome - you've arrived at the correct group - we all have APS/Hughes syndrome and share our experiences and give support.

Living with life time warfarin is better than further strokes - but that can still give ups and downs.

Raise any question you may have, others will share....

[Mermaidatheart in reply to HollyHeski]

Thank you for that, I am certain I will have questions.

Is it true that the finger prick INR measure is not the best method?

As an aside: I noticed your picture of the husky. I too have a love for huskies!!

[HollyHeski Administrator in reply to Mermaidatheart]

Sadly I don't know much about warfarin, as I've been unable to take - many on here can advise.

My lovely rescued dog is a Utonagan - ex RSPCA, badly beaten but now gives us as much pleasure as we give her a good home. We've had her 2 1/2 years now. Utonagan means 'spirit of wolf'- mainly alsation with colouring of inuit dogs to look like a wolf.

[Lure2 in reply to Mermaidatheart]

The best method is to cheque the blood in the vein (not finger) at a hospital lab or similar.

[Wittycjt]

Where are you from?

[Mermaidatheart in reply to Wittycjt]

Florida

[Wittycjt in reply to Mermaidatheart]

Did you get my message, there should be a number by the”chat” sign above, click on it 🤓

[Mermaidatheart in reply to Wittycjt]

did receive, just away from the computer for awhile, will check it out

[msins]

You have come to the right place My stroke was at 48 and I was completely healthy It took me about a year to fully recover. I got back all my faculties but never all my energy level. I have been on Coumadin since1992 and have my inr checked every 3 weeks from my vein. I’m now facing an aorta valve replacement and will have to come off my Coumadin. Even with bridging I fear forming a clot and having a stroke. Good luck to you and welcome to the group

[hihannula in reply to msins]

Is your aorta valve replacement due to the APS or the warfarin or some other reason we should be aware of. Thanks. Holly

[msins in reply to hihannula]

Might be due to Aps

[Wittycjt in reply to hihannula]

Mine was due to APS, that’s when they knew I had “Hughes”...

[Mermaidatheart in reply to msins]

wow, that is a very stressful situation. Will be thinking of you.

[Holley]

Welcome! I'm 48 and was diagnosed in 2006 after having surgical complications. I've been on warfarin for 12 years. I too look healthy from the outside. You'll find that some of us on here are minimally affected by APS, whereas others are more so. Are you in the U.S.? I had a stroke in May. My INR was subtherapeutic. Make sure to get your levels checked frequently. Be mindful of diet and foods that are high in vitamin K. I've been told by my docs the most important thing is to be consistent with diet from day to day.

Cheers!

Holley

[Mermaidatheart in reply to Holley]

in the US. After reading many posts, I realize I am very fortunate.

[Holley in reply to Mermaidatheart]

I'm in Washington DC. Do you know if you're positive for lupus anticoagulant (LA)? They make home testing machines to check your INR. Find out which is covered by your health insurance. You may want to look into that as an option. I'm not able to use a home machine due to the fact that I'm LA positive and was getting wildly inaccurate readings but I know people on here who also have it and can use them. My INR range is 2.5-3.5. I also have a mechanical heart valve.

[DannyBoy1]

Welcome. You will find many kindhearted and knowledgeable folks here.

[Zezes-nan]

Hi and welcome. I have my inr done regularly by finger prick they only send me to have a vein one if I the reading is higher or lower than they expect. I know some people say you should have it done via the vein but my PCT will only send me for those if there are concerns they aren't done as routine.

[Mermaidatheart in reply to Zezes-nan]

Ok, that is good to know. This is all so new to me, thank you all for your input!

[Wittycjt in reply to Mermaidatheart]

You can also discuss lovenox/enoxaparin injections if they are resistive to raise your INR- look at it as a diabetic looks at insulin: it’s usually ordered 1mg/kg every twelve hours. Good wishes

[Mermaidatheart]

My INR level has been set at 2-3. I will be visiting the hematologist this coming week. Will see if that INR level needs to be the same or different. So far my level has been ok to control. I do try very hard to watch what I am consuming

[MaryF Administrator]

Hi and welcome, you are in the right group, and here also is our charity website: ghic.world/ You will find you learn a lot by reading people's posts and also the various responses which cover a wide perspective regarding the condition and at times associated conditions. MaryF

[ronnt]

hi mermaid ive been on warfarin on and off over 8 yrs, have not been able to be formerly diagnosed , but ive had 3 dvt over last 8 yrs was on eliquis after second one didnt like side effects was making potassium high, my last epiosode almost took me out but wasnt my day to go.....i have a home tester checked once a month ive been consistent 2.5-3 over a year....stay hydrated and also i noticed magnesium helps also....and be careful with any type of foods with soybean oil...also b complex supplements helps with the tired feeling from not eating lots of greens...hope things are goin well

[ronnt]

also i take vitamin c based supplement .

[HollyHeski Administrator in reply to ronnt]

Hi, I have removed the link because any supplements are not suitable, and we only encourage taking them with your specialist approval.

Totally agree with your diet views thank you for replying.