INR Testing

[Byourownadvocate]

For those taking Coumadin, when you have INR checked, are you doing finger stick or vein draw. Also, I came across a medical company that supplies an INR machine for use at home, with your doctor’s approval, claiming the service is covered by insurance, but you have to test weekly. Anyone familiar with this? I’m unable to drive, and rely on so many people to get me to doc appts, it’s so difficult trying to get to Coumadin Clinic too, sounds like it would be perfect… I’m just a little skeptical as I’ve never heard of this option before. Thanks for your help! B well! 😉

[MaryF Administrator]

Hi, I don't do either, however many on here do a mixture of both, clinic and also home testing, I am sure you will get some useful answers later on. I have at times had long periods on Fragmin but not on Warfarin/Coumadin. MaryF

[orygun66]

I use a home INR monitor. The machine is the Roche Diagnostics CoaguChek. The company that provided it to me is Acelis Connected Health. I saw another company advertised called mdINR. I've been doing my testing at home fir at least six years I'd say. It's the only way to go. I depend on rides as well and test weekly. Let me know if you have any more questions.

[Byourownadvocate in reply to orygun66]

Thanks for your help…sounds like these companies are legit, I have them coordinating insurance benefits and hopefully up and running soon.

[Jumper99]

Hi. I’ve been home testing (in UK) for about 17 years now. Finger prick testing doesn’t give correct results for everyone with APS so you do need to check that by comparing home tests with venous tests a few times before you rely on the finger prick tests. But the majority of us can use it with no problem. If I remember correctly the website for APSFA has more details about difficulties in the USA with your health system over there so it might be worth checking that out.

[Byourownadvocate in reply to Jumper99]

Thanks for response. I am aware of the information they put up on the website. I am going with decision I make with my Doctor.

[KellyInTexas Administrator]

Hello,

The problem I have found with this is who manages the inr with the Acelis connected health?

They limit the number of strips you can have greatly. Therefore, you can’t test the way ( as often ) as you need to.

You also can’t get the results right away. Therefore you can’t know how to adjust your green vegetables or you mg. Dose. Of warfarin.

I find it incredibly important that you trial VP ( - venipuncture ) a long side FP ( finger prick ) values as a personal test run for at least three months to see if you are a candidate for a coagucheck XS machine.

You do not have to go through any monitoring service that I know of.

( this may have changed since I last ordered.)

The issue with the test strips is there are antibodies in the reagents in the test strips that interfere with our APS antibodies, causing inaccurate readings for a lot of us. This is why these stinger stick methods are not recommended for APS patients.

Now having said that, many of us are “steadily and consistently the same amount off” from the gold standard vein draw, or vein puncture. They are lucky!

I was always too crazy inconsistent and the pattern of inconsistency/ discrepancy between the Finger prick value and vein value could not be relied upon. I was too “labile” .

I tried for a year. I took my self purchased machine ( my insurance did not cover) to the hospital lab with me. I called a medical supplier ( private) and ordered strips to my home. We drew blood ( PT/ INR ) and I self tested INR with my machine at the same time. ( must be at same time.)

I charted both values.

I only ever made warfarin dosing changes off Vein draws.

My diet was so steady. Greens so steady- same K value with regards to value of vitamin K.

It was determined it really was not safe for me to rely on coagucheck finger prick method.

I am drawn three times a week.

[nyctapdancer]

I get my INR checked with a vein at my dr's office about once every 6-8 weeks. I have a home testing machine, which is indeed covered by insurance, but have never been able to get it to work.

I have been taking Warfarin for 20 years or so. At the beginning, I used to get tested a lot. But I've been sable for many years.

I had the good fortune to have a hematologist who also has APLS and he taught me how to live with it.

I've had colonoscopy, shoulder surgery (twice), removal of a kidney stone, plus a variety of small surgical procedures and lots of dental work while on Warfarin, with zero bleeding issues.

I also eat leafy greens daily and take Advil on the rare occasions when I need it. The key for me has always been keeping my diet steady and taking lots of vitamins.

We keep my INR between 3.5 and 4, and that generally scares doctors until they talk to my GP who manages this for me. He explains to them that blood thinners just make me normal.

I hope that helps.

BL

[KellyInTexas Administrator in reply to nyctapdancer]

My GP manages my INR also- great explanation by GP.

[GinaD]

I get a venous draw test once a month now. My INR remains boringly stable with same amount of greens a day but tsking 7 mgs warfarin 5x a week and 8 mgs 2x week. Why does a fluctuating warfarin dose result in a steady INR for me? ??? we're all different.

[Lure2]

Hi there,

I live in Sweden and I am also tripplepositive with high titres and I have been on Warfarin since 2012 and selftested at home and been tested also in the vein at the hospital lab to find out if there is a constant difference between the fingerprickvalue and the veinvalue.

First I used the CoaguChek XS but there was a too great difference between the two testmethods so I could not rely on that machine.

We are so lucky in Sweden that we get that testing help free of charge here. The same for Diabetes (insulin tests).

The hospital bought the " iLine Microsystem " instead and now when I take the two blood-tests on the same day within a couple of hours time, there is maximum 0,4 % difference in INR and that is ok but it should not differ more than that.

I need an INR between 3.5 - 4.0 and when it is too low one day I take a Fragminshot till I get it up again.

Selftesting is great but you must do it rather often. Write everything down even how much greens you eat every day (try to eat the same amount) . My values go up and down very quickly so selftesting is the only way for me to handle my situation.

[KellyInTexas Administrator in reply to Lure2]

That reminds me- I need to check again and see if I can get this system in this area now. Last I tried- two years ago- I could not.

Kerstin- I wonder, with your new system, could you ask if the higher the INR, the more unreliable it becomes, the reading?

This was the case with the Coagucheck xs.

My INR target now has been set to 6.5. I’m very desperately sick with APS symptoms with anything under 6.0 now. ( tingling face, migraines, pins and needles, ileus , and now connective tissue problems with eyes- retinas are starting to early mild detachment.) very painful when inr is low.

I really wish I could try this system.

[Lure2 in reply to KellyInTexas]

What you ask I cannot answer. My good, what a high INR you need: "6.5". You said you tested at the lab at the hospital 3 times a week I think it was. Then I wonder is your INR stable most of the time at that high INR when you test 3 times a week every time? If it was you should be without symptoms as I understand it. So under that INR you get all those symptoms?

I gave you the name of the new machine they have at my hospital in Stockholm. When I used the CoaguChek XS my fingerprick was 4.5 but in the vein it was

3.2 ( I read from my notes now). A difference between 1.3 in INR. That is not OK.

Sometimes it could also be 1.0 or 1.7. You could not rely on it.

As I do not use the CoaguChek XS any more I do not know if they have changed the reagins or the strips in some way lately.

I am sorry I can not help you any more Kelly. I feel fine now. I wish you good luck.

If anyone would succeed it would be you in getting the help you need.

Hugs to you from Kerstin

[KellyInTexas Administrator in reply to Lure2]

My symptoms are very controlled now with an INR of 6.5 . Even 6.8. It’s much more stable now. My neurologist has added a “mast cell stabilizing cocktail” to my daily meds.

It is used for IVIG and rituximab/ Benlysta infusion patients of his.

Another thing that has helped migraines immensely is monthly injections ( I give myself- ordered by neurologist) is Aimovig 140mg.

I did call and I tried to get the new machine you are now using. I could not at that time. There was a representative in the Dallas area- but only for hematology clinics and would not work with any hospital systems in our area of Texas.

Thank you Kerstin- so glad to hear you are doing well. Hope you are still going for your daily walks.

Hugs,

Kelly

[Byourownadvocate in reply to Lure2]

I note what you have told me thus far. I am still on a very long journey to be acknowledged by doctors and not being dismissed as needing mental health care. I believe now, I have made it to the doctors who will help me, and I’m cleaning house and not arguing with doctors anymore. My INR has been below 2.0 for last 3 months. They treated me with plasmapheresis and it didn’t provide the relief I got in August from 3 treatments. I am still researching, listening to others like me and I’m amazed by the information on the APS UK page, so factual and informative. I have faith that the current buzz about clotting disorders brought about by the pandemic will help bring awareness to APS, as of right now, it’s just not recognized here in the states as it should be, other than cases related to pregnancy loss, DVT…seems once it gets more complicated, more difficult to get treatment or acknowledged. I thank you for your responses.

[Lure2 in reply to Byourownadvocate]

You could perhaps follow some of the advice I have given you and learn as much about our illness and find a Specialist.

[Byourownadvocate in reply to Lure2]

I’m sorry, as I have said I’m new to this site. I am gathering as much information from the patient point of view, trying to make a connection and compare. My decisions are made with my healthcare providers not based on any social media site. The book you mentioned I do have fabulous resource for information. As I have said, I am currently in a workup, I feel with the best providers I could find. I will allow them to continue their workup and then have a game plan on how to treat. I hear your advice, and I wish it was just about increasing my INR. Thank u for your knowledge though, I appreciate. As I continue to wait, it makes me feel better to engage with patients like me.

[Mermaidatheart]

I use a home INR monitor, the same machine as orygun66. I had one that was covered by insurance, but because of my deductible, it was less expensive to buy one. My doctor prescribed it, had it shipped to his office. I purchase test strips online when needed.(not too many as they do expire and the machine will not accept them). I do see periodically have blood tests at labs. This works for me as my level only needs to be 2-3 range. However you need to follow the advice of your doctor.

[KellyInTexas Administrator]

Where are you located? I see USA? Which state? Which large city is closest to you?

[KateEsq]

I test by vein draw once a week in my doctor's office. I used to do point of care finger sticks about once a week at my doctor's office (I'm in the US, so checking at home isn't as common here), but after comparing a finger stick to vein draw, I found the finger sticks to be inaccurate. It ranged from no difference to 0.7 higher on the finger stick, so I was getting false highs. There was no steady range, so finger sticks were out for me.

[BeachHaven123]

I have used both .I have a machine at home-covered by insurance and strips My doctor also gave me a standing stat order for PTInr in case they are unsure. I do the test and then call my results into Acelis-you can find them online -if it is out of range

they call my cardiologist and we confer on the altered dosage. They will cover 1 strip a week with insurance But many times my doc will want it 2x a week. Just to make sure I am headed in the right direction New rules in medicare say you have to pay for any extra. I ordered an extra box on eBay just because I noticed a slowing in delivery and was concerned I might get caught with all that is going on without. The blood draw is more accurate but I use both. The machine is a convenience for when you cannot get out or

are traveling. Although fully vaccinated I had both variants and during that time it was

a life saver. I could take to my doctor without having to go anywhere. Good luck!

[Byourownadvocate in reply to BeachHaven123]

Thanks, I hear ya…good point with mail delivery, will keep stash…and true with weather too…thanks and be well!😊