Sticky Blood-Hughes Syndrome Support
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Inr

How High is your inr and how do you know what is best?

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My Inr is kept as close to 4.5 as possible because I had a 3rd stroke when it was 4.

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Everybody on here is different, but it is normally set by the specialist for a particular individual by their consultant, however as you probably know those with Hughes Syndrome/APS seem to do better with a higher INR, than the general population. MaryF

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Thanks for your replies 🙂

I know it’s very individual, but my gp wont have it higher than 3,5... at the minute im 2,4 and very tirred.

At one stage i was 4,2 and really great, he removed a tablet.

My inr is up and down, cos some days i need painkillers to cope the day.

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To maintain a stable Inr you'd need to take the same amount of pain killers every day. I take Morphine twice a day and as long as I take the same amount every day my Inr is steady.

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I dont need painkiller everyday 🙏😃

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Mine is 3-4 target 3.5 but I feel no different in symptoms than when it was 2.5

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Once upon a time I needed an INR of 3 or above. THEN I found — by acccident! — that I have gluten sensitivity (or full fledged celiac.) After going gluten free my rheumatoid factors (IgM, IgA) both fell from very high to what one hematologist called “boring.” My IgG fell from ridiculously high to “almost normal.” AND, my effective INR fell to 2. THEN I consulted with Cleveland Clinic Functional Medicine and went on their “detoxification diet” and now my INR can drop to as low as 1.4 with no symptoms. May not work for you, but you might explore gluten free.

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Gina, are you primary APS, I can’t recall,Cindy

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That sounds amazing GinaD!!

It’s like you have cured yourself 😃👏

I dont have time to change my lifestyle at the minute with own company and a child alone... but i will keep it in mind when i have spare time i dont know where to put 😂😂

Thank you for sharing 😃

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My INR target is 4. If I drop below 3.5 I get neurological symptoms and pain. I need to inject fragmin when I get to this stage.

It was trial and error at first. My first target was 3-4 due to arterial issues but I was still getting symptoms. I’m mainly well at 4 but can still have issues.

Kelly

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Hi,

Like Yllek I need an INR around 4.0 and have it stable there.

We do need a Specialist of Autoimmun illnesses who has had patients like us with this sticky blood and who understands that we need to be stable at a special therapeutic range of INR all the time. That way you get rid of the microclots we often have.

We usually need a Selftesting machine to be able to have control and not have to go to the hospital for a vein-test all the time.

Read about your illness. A good book is "Sticky Blood Explained" by Kay Thackay. She has this illness herself and tells about the different aspects of this illness and it is also good for realatives to better understand how we fell and why we feel like we do.

There is a second book also; "More Sticky Blood" but the first one is the best I think.

Best wishes from Kerstin in Stockholm

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Hi Kerstin

My gp is not happy about me doing course in self testing, im am working on this hard!

Also so i have a chance to see why i fell bad some days.

To be honest, im sick of being sick and tirred 😕

I have the book 🙂

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Try to get a Specialist of autoimmun illnesses. We need such a Doctor! Are you selftesting? For us (especially if you have Lupus Anticoagulant as one of the antibodies positive) it can be diffucult to get a proper and stable INR as there is often a difference between the fingertest (machine) and in the vein at the lab (the number that counts?) but if the differences are always the same you can be happy with your selftesting and continue. Have you done double tests in the finger and in the vein several times?

Kerstin

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Hi again,

I now saw you are from my neighbour-country Denmark! It should not be a problem to get a Specialist there I guess, especially if you live in Kopenhagen. I also saw you had tested an oral anticoagulant earlier and now you say you are on Warfarin. I also saw that I had answered you 2 years ago.

Hope you find your Specialist which is very important for us. There are few Doctors in Sweden who understands how APS works. I am lucky I am at the new Karolinska in Stockholm.

Kerstin

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Hello again 🙂

I have a specialist now.

She Said many of my symptoms remind her of other illneses... so i just get on with things.

Most of the time im fine... but there is those days 🙄

I hope to be able to self test soon anyway, maybe i can see a different in why i have bad days.

Thank you xx

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As she says it reminds her of other illnesses (you say she is a Specialist of autoimmun illnesses) I wonder if she has tested you completely?

APS go hand in hand with Sjögrens and Thyroidea and SLE for ex. What thaerapeutic INR has she decided for you? Are you positive to all the three antibodies?

Kerstin

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She is a rheumathologist.

She has just tested me for a lot and found nothing 😁

She dont deal with my inr, my own gp has dealt with it always cos hospital made a mistake.

I hope i will be able to selftest soon, and maybe have more blood experience over my case.

I have tested positiv for 1 of the antibodies, after PE.

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Which one was it? If you tested positive to the Lupus Anticoagulant it can be difficult to keep the INR within your therapeutic range when selftesting. As you have had a PE you should most certainly be in the higher range, which means an INR between 3.5 - 4.0.

I wonder if your Rheumatologist knows APS (Specialist) as she lets your GP decide about your INR? Is your GP then responsible for you if something happens to you as to your APS and blood? There are Rheumatologists with no knowledge of APS and autoimmun illnesses.

I can tell you I have both a Hematologist and a Rheumatologist who take care of me and they know APS very well but I am positive to all three antibodies and have persistant high titres though. Very good if they do not find anything in you blood though, but important to know!

Always ask for copies of your bloodresults.

Kerstin

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As you can see on GHIC Denmark has no specialist but she is a professor in lupus and aps she has told.

My gp has the responsibility for me yes...

i have tested positiv for anti-beta2- glycoprotein and also i have faktor ll

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Good. Then you are not positive to Lupus Anticoagulant which may give you problems when selftesting. What INR does he suggest for you?

Kerstin

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He’s Guessing between 2,5 and 3 is fine....

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Have you read "Sticky Blood explained"? Also what prof Hughes says about INR.

I dare say that an INR at 2.5 is quite too low to get rid of your problems with this illness. Most of us need an INR between 3.5 - 4.0. What does your Specialist Rheumatologist say about that low number? I doubt she knows APS very well.

Suggest you change to another more knowledable Rheumatologist or Hematologist.

Have a nice weekend!

We have the most wonderful and sunny weather here in Stockholm and have had for more than 2 weeks now. I hope you have the same but know the westcoast have had a lot of rain and thunder but we need that also.

Kerstin

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