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Sticky Blood-Hughes Syndrome Support
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INR Machine

Hello All!!

I’m kinda excited... My Dr approved me for a Protine/INR Machine! I test once a week. This is what I feel good about. But..... does anyone have any pointers? I have read in a Medical Guide That APS Patients should NOT use an at home Machine, it really didn’t say why? I plan on going to my Dr EVERY Month to be tested there but this is going to be a Heaven sent devise for me to be able to test weekly as well. My Dr Office is pretty far from my home, so this will help to make that decision whether I need to go in for a visit. Plus I will be in sync with my Drs on my weekly results as well. I’m very responsible & take my Illness very very serious!!! What are the pros & Cons of doing at home weekly testing???

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I will be getting one too so interested in this too!

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🧐

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I have an INR home tester. I love having this, especially because I tend to travel. Suggest having a blood draw INR test and within 4 hrs of that same day, test at home. This way you can see what the difference (if there is one) to better home monitor.

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Perfect!! That’s a true checker!! Thank You so much, had not thought of that!

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Remember it is the INR vein-value that you can rely on!

Many members here (me included) have a higher finger-prick-value than the vein-value at a lab. Therefor important to take several doubletests to find out your own situation.

Today I have tested at home on my home-tester and 2 hours later I was at the hospital for a vein-test at their lab.

Also remember it is CONSTANTY as to greens and drugs etc . The greens will reduce the INR. Some drugs may increase and other drugs may reduce your INR.

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They rarely do a vein test. Only if I request it. That’s what ai have tried to explain whwn my INR reads between 3.-3.5 not to panic that those reading are probably best for my via finger stick.

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Greens will tend to decrease INR.

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I mean what i wrote!

If you eat greens it will lower or reduce the INR!

I hope my English is not cheating me......no.

Kerstin in Stockholm

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Your English has NEVER been a problem. Never. Not that I have ever encountered.

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Glad to hear that! Thanks.

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So sorry Lure2 my brain was not functioning i was wrong i will edit it out.. again apologies, its not your English it was my brain mis guiding me, hope you can forgive me,that was a big mistake on my part! Cindy

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Hi Cindy,

Do not worry. I know how difficult is is to think "backwards" as you have to increase the Warfarin to get a higher INR and reduce the INR with greens when the INR is too high. It is easy to get mixed up. I have done it many times.

Kerstin

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No Lure2 was correct in her English - eating green vegetables will reduce/lower your INR.

Which is why it is recommended that you eat the same quantities of green veg/high vitamin k foods each day.

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Absolutely correct!

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Abbsolutely correct, so sorry everyone, Cindy

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Always remember, vitamin k is an , “antagonist “ to warfarin. It works “ against” warfarin, meaning it will decrease its effectiveness.

Latin roots: a / an/ -vs- pro

Antagonist -vs protagonist ( you can even think of this analogy in literature.)

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I also wonder if you are positive to Lupus Anticogulant? Then it can be difficult to selftest for those of us who need a rather high INR of 4.0.

You told us you had an therapeutic level of 2.5 - 2.8 in INR I think you said. That is actually a little low for most of us. At least most of us must be over an INR of 3.0 or 3.5. That has to do with your symptoms and how many antibodies you have positive and if you have very high titres also.

I hope you have got a Specialist in the USA as that is very important. The oral anticoagulants are not to be trusted for some of us at least. This is a question for your Specialist.

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Yes the Dr panic if it even gets to 3!!! I’ve tried to explain it’s ok but they are very uncomfortable if it goes to 3. They just don’t understand. I follow the Diet very well only time I have issues is when I take Antibiotics.

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If you are “lupus anticoagulant” positive you may have false readings. Im sure others will be along too. Many have had problems with the strips for their machines. Check out some of KellyInTexas posts/replies. Good luck

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As of right now.. I’m negative for Lupus

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Lupus. And “lupus Anticoagulant” are two very different things

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It is very important that you compare your clinic readings with your finger prick readings and explain to your doctor that many with Hughes Syndrome/APS have to have a higher INR due to our blood being thicker in the first place, maybe taking somebody along to fight your corner re having a proper vein draw! I hope it goes well for you, your new regime, do let us know how it goes, over time. MaryF

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Thank You, my machine arrives tomorrow! March 21st.

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Happy St. Patrick's Day from California, USA.

I am quite interested in this topic. I tried a CoaguCheck machine several years ago but the readings were way off so I ended up returning the machine. The instructions that came with the machine did say that some people with APS can't reliably use the machine as the material on the test strips was sensitive to a certain antibody.

Both times I was tested for the antibody common in the blood of people with APS, I had high levels of it, but I don't recall what the name of the antibody is, possibly it was lupus anticoagulant antibody.

I've been taking warfarin for over twenty years now and doing vein draws once a week to once a month, depending on the readings.

I'm thinking about retiring and moving to Mexico and I may not have easy access to a lab for regular vein draws and I wonder if it would be a good idea to try the self-test machine again.

I guess what I want to know is:

1. Does a person who tests with high levels of APS related antibodies always have them, or might the antibody levels reduce during a lifetime?

And,

2. Have the test machines evolved over the years? Do they still require test strips with APS antibody sensitivity?

I'm looking forward to hearing your ideas.

- Jeanette

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Hi,

It is Lupus Anticoagulant (the antibody not the illness) that can make it difficult to rely on the fingerprick-value when selftesting. The vein-value at a lab is always correct and can be relied on.

Therefor if selftesting, especially with Lupus Anticoagulant and a high INR (bigger difference if you stay on a high INR), you should have several doubletests (fingerprick - vein) within up to a 4 hours time to know if there is a difference and if the difference is always the same between the two readings.

If the difference is about the same then you know that you can selftest and do not have to go to the lab very often.

We need test strips for testing.

I can tell you that I have only tested my antibodies after 2002 (when I was diagnosed) but done it several times a year as I am triple-positive with persistant high titres. Live in Sweden.

In my case the antibodies have increased during these years.

We must remember we are all unique with this tricky illness . What goes with one does not go with another. Some have positive antibodies to begin with and later on negative. For some of us the symptoms start this illness without our knowing it and later on follow the positive antibodies.

When we have started Warfarin we can not do the test for Lupus Anticoagulant anymore.

Ok to do the Kardiolipinantibodies and Beta-2-Glycoprotein 1. I guess you know this already.

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I had read wasn’t very suitable for APS patients. I’m rarely Vein drawn, my labs mainly are finger prick. I had always wandered why it said they were not very reliable, but you have explained this!!! Thank You! I know the few times with the vein draw my readings were always lower than finger pricks which concerned me but not the Drs, that’s why I like it when a finger prick reads 2.5 or Higher. I can’t get the Drs to understand this tho. Best of Luck to you!!

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I wonder if you have got a Consultant who is knowledable of APS.

The vein-draw at a lab is the value that counts and is reliable for us. As you said yourself, your fingerprick-value was higher than the vein-value (that is the fact for me who is triple-positive and also many of us who selftest).

Than you should be able to do several vein-draws and know if you have a stable difference. After that you can rely on your test-machine

An INR of 2.5-2.8 is a bit low for us. What symptoms do you have?

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My symptoms are mainly fatigue, headache, muscle stiffness, rash on my foot, ankle & forearm all on my left side. Seems I feel like when this happens I’m in a ‘flare’ not really a rash but itchy bumps that drive me crazy. My INR has stayed pretty stable ranging from 2.0-2.5 which I feel better when my blood is thinner, but again Drs panic when you get to the 3.0 range. I was found APS positive almost 5 years ago when I suffered from a stroke.

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As said before if you had a higher therapeutic level of your INR you certainly would feel much better.

Also if you should selftest you should have double vein-draws at a lab. See previous answers.

You say you take your illness very serious and if you do, you should look for a Specialist who knows APS and that we must test in a vein (!) and that we need a higher INR of around 3.5 - 4.0 as you have had a stroke earlier.

Good luck with that!

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Yes & I do. There are no Drs in my area I would say 200 miles or more would be the closest. But I will ask for a Vein Drawn Rest. What is a double vein?

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Parallel testing. ( take your coagucheck with you and have a vein draw at the same time. It is recommended not to let any more than 4 hours pass between a finger prick and vein draw, but I have learned that an hour is all that should pass. )

My local hospital lab does not mind me bringing my coagucheck in with me to lab. I cack at the same time as vein draw. This is parallel testing. ( what Kerstin is calling double testing.)

Make sure to keep strips in the temperature range recommended, and close cap on tube immediately. Strips cannot be exposed to light.

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Thanks Kelly! That’s a great idea, I actually go Tuesday the 26th for a check! I will get them to do a vein draw!! I will update you in the result.

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You must do this each time. 👍

You will learn your particular “ off sets “ this way, ( difference between the Vein value and finger prick value) and see how you are with machine.

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I HAVE had a vein draw a few times from my Rheumatologist & it is always Thicker than finger prick result . That’s why Im always concern when my INR gets below 2.0 with a finger stick.

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Oh, I see. For some reason I was thinking you were just now about to receive your machine.

Sounds like you know and are already experiencing the higher the INR , the greater the difference usuaywill be between the two, with the INR home checker reading higher.

But you may find sometimes the difference is :

.8

1.3

.7

2.0

.3

Even if the INR is not too high. Try to get a vein draw once a week or twice a week for a while.

Oh wait... was I going to post a pic for you of my GP’s standing order on file with lab allowing them to call me directly and vise versa? Avoiding the patient portal? Because I forgot to do that. Will you private message me in the morning and remind me to put that on? As a format you can show your doctor? It makes life so easy. You can have it done locally instead of at Rheumatoligist / Hematologist office.

( I self adjust and manage my own warfarin and my own heparin bridging.) I just keep a tight log of everything I do. I can also post a log spreadsheet if you’d like. I made my own because I couldn’t find any I really liked.

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I have been self testing for five years on the ALERE home monitoring machine for my INR. The first nine months after I was diagnosed with APS and Factor V Leiden I was visiting my doctor's office just about every week for a 30 mile round-trip trip visit. He then approved my self testing. It's very accurate and after I test every Wednesday morning I call the alere company with the results and they faxed it over to my hematologist office. If the numbers are in range I do not receive a call from my hematologists office. If a number is out of range the triage nurse calls me and discusses whether I have to adjust the medication or I have to eat more greens for vitamin K if the number is too high and so on. Every three months I go into his office for complete blood work and I always test myself that morning to see if my machine coincides with their reading. Self-testing is wonderful

Mozelle

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