Sticky Blood-Hughes Syndrome Support
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Hello!

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.

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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....

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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!!

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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.

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

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Hello and welcome. Many on here, including myself found ourselves with this disease after suffering a stroke in middle age. However if you look back over your life you may well see tell tale signs that you have had this disease a lot longer than you think.

Also be kind to yourself, it’s very early days yet, it will take you many months to fully recover from your stroke, however small you think it was. It’s still a brain injury which requires recovery.

As for warfarin and the testing of INR. The vein draw gives you the best and most accurate result, however if you require frequent tests because you have problems keeping your INR within range, then drawing from veins is not a good idea. For that reason hospitals do finger prick tests and then check with vein draws every so often. Many people also like to get their own self testing machines in order to free up their lives from frequent hospital, GP or clinic visits. Your machine would have to be calibrated against the hospital machine and you would have to do many test runs. Eventually though it can be a good option. Sometimes however the INR can be very unstable which makes self testing difficult.

What has your INR been set at and have you been able to keep it there?

Everyone here has APS so you are in good company. We also advise people to get their thyroid properly tested and also make sure Vit D, B12 and ferritin levels are where they should be as they can be low and give cross over symptoms.

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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

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2/3 is much too low for someone with APS. That is the level they set for people who don’t have sticky blood! Think of cream and skimmed milk, you are trying to get more to skimmed milk where as others will already have it like that but for other reasons like AF need to stop forming clots.

You should raise your INR to a level that removes your symptoms. For some that may be 3 but for others it could be as high as 4.5

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Where are you from?

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Florida

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Prof Graham Hughes who discovered this disease and whose name the charity GHIC has been named after, did a talk for a group of about 30 or more Florida nurses last year which I attended. So perhaps a nurse from your Drs will have been there and taken back the crucial information so needed in your part of America. I hope so!

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

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

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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

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

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Might be due to Aps

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

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

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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

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

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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.

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

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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.

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

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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

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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

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