Those on Warfarin... How often is you... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Those on Warfarin... How often is your INR tested? Also, what are the other blood thinning options?


As much knowledge as I've acquired, I am still learning. Common sense tells me my INR should be in range all the time and tested at least multiple times week, especially since it takes warfarin so long to affect my INR. Kind of like insulin with a diabetic. Currently, I'm being tested once per week by clinic and when my INR is within range a couple times in a row, then they test every other week.

I'm also self testing, but the clinic still has me call in with machine results. They will not allow me to regulate my own warfarin.

I'm thinking of getting Kay's book. I just have so many specific questions to my case I need answered. I'm wondering how much she talks about in her book.

33 Replies

Hi Mylafont,

That is fantastic that you can selftest! I also doubletested for a year before i could do my own monitoring. I still (after 4 years) doubletest every 3 - 4 month with the hospital in my vein at the lab. It differ between the vein test at the lab with the finger test with CoaguChekXS around 1.0. But it is Always THE SAME DIFFERENCE. If I have 4.8 with the machine I have 3.8 in the vein at the lab. It can differ all the same up to 0,2 - 0,3 but that is quite OK (said by expertice both from clinic and Roche specialist).

It is also important, that after you do the stick in the finger, you do not wait too long before you test the blood on the teststrip. It can be a difference if you wait a very long time. It should be within 5 seconds.

I do not think you can read about selftesting in Kays book because it is written some years ago. Perhaps you may have a little info but not how to do it. I had to learn and I got a lot of papers to take home to understand what i had to avoid and what would interfere with my warfarin etc etc..

All people with APS should be allowed to selftest as this is the best way to keep in range and stay in range. I am primary APS (no other autoimmun illnesses known so far) and when some also have Lupus or Sjögrens and take warfarin perhaps they feel ok at a lower INR. I do not know this but I can think it is that way. I also have all the antibodies there are and also in high titres all the time. Others seronegative but with symptoms or they with only Lupus Anticoagulant or only Beta2Glycoprotein 1 perhaps also can feel ok at a lower INR. I need an INR around 3.8 to feel ok and avoid miniclots and microembolies.


mylafont in reply to Lure2

Once I can be confident of the machine, I won't mind once per month or so vein tests, but I'm thinking I still should be testing and adjusting more than once per week.

Currently my therapeutic INR is 3-3.5. personally I think it should be slightly higher.

mylafont in reply to Lure2

I just wish there was expert info I could find to answer my questions and present to my docs when I think things should be different.

Wittycjt in reply to mylafont

See question of the month answered by Prof hughes. You can use this, good luck

If your INR is staying within theraputic range, why do you feel you need to test more often?

My experience on warfarin is that so long as I'm "good" with all the other factors that potentially cause my INR to fluctuate and I take it at the same time, it stays within range.

I would have thought making multiple minor adjustments that aren't necessary would actually cause it to be more unstable!

I'm no expert, just sharing the way I think about it as I'm genuinely curious what's made you think that?

My INR has not always been within range and I am fairly new to APS.


HI, you have the best of both worlds to be keeping and eye at home in conjunction with the clinic. I am sure they will be keen to keep you at the best set range for your personal needs, let us know how you get on. MaryF

mylafont in reply to MaryF

Yes, but I am LA positive, so I need to collect data so I can be confident enough with the consistency in the difference between machine and lab to trust machine only. Then I have to see if health insurance would pay for enough supplies for me to test more than once per week if I felt necessary. So right now I am not testing if I am not also testing at lab.

MaryFAdministrator in reply to mylafont

I hope you are lucky with what you require, do keep us posted, MaryF

I agree with Sheridesaunicorn

My consultant specifically said that our INRs will fluctuate, and the best way to deal with this is to change the dose as little as possible so your body can adjust to it. Were you aware that if you change your dose it can take up to 72 hours to change your INR?

She also said we should not test too often. Once a week sounds fine to me.

I self test, but also ring my results to the clinic. This way I have cover if I have a crisis. If I wanted to self manage, I would have to sign a paper taking all responsibility on myself. I didn't feel comfortable with that. I have an arrangement whereby if I feel rough I can test any time between formal tests, and if I am out of range I can ring. If I am stable the clinic let me go 2 weeks, or even a month. I know as soon as I go out of range. My symptoms return below 4, or I get 'high' if I am over my target. You can learn what suits by listening to your body I feel, and getting your clinic on side.

Good luck with it all!

Blessings Ann

mylafont in reply to london-lass

This is the kind of info I'm looking for. My INR for the most part has been all over the place. I am self testing parallel to lab right now to see if I can get consistent enough differences to rely on machine only.

I'm good with once a week if that's the norm with most taking warfarin while regulating.

What are other thinning options available?

Hi, I self test with coagucheck machine XS , when the clinic tell me too once a week or every two weeks like you if stable.

I can tell usually when my INR is out of range, more muddled, clumsy, lack of energy, depressed 9 times out of 10 I am right

I email the result to the clinic, it takes them forever to answer the phone, they send me a letter to tell me what dose to take

I have started to put on the email what I am thinking of changing to if its not in range it only needs and increase or decrease by 0.5 mgs. It's only me who knows what I have eaten and wether it's likely to improve on its own.

I know they don't like to change the dose as it can mess up the stability of the INR

So far they have agreed with my dose change, I have had to do it on my own if I don't feel well at the weekend.

I have Clexane injections to give myself if my INR is under 3

If I have a headache it I test it as well, so reassuring

My haematologist told me self testing is unreliable if you are LA positive, which I am. I am tested weekly at the hospital via finger prick method. They are trying to get my INR to 3-3.5 but my body is resisting! I tested 1.6 and was sent home with instruction to increase the warfarin in two days time. Before the two days were up, I had a massive fit. When I rang haematologist office on the next working day, they passed my message on to the nurse who'd done the INR test! I felt like I'd been caught telling tales after school but wanted to know why I hadn't been given Clexane. All she said was that I should have gone to A & E (and wait seven hours to be seen?)

mylafont in reply to minnime63

It's not "Self" testing that's inaccurate when LA positive it's the machine. Finger prick blood is coming from capillary instead of a vein. The machine gives a higher reading in those with APS that are also LA positive,

I'm parallel testing to see if I can get consistent differences between machine and lab and hopefully get to a point to rely on machine only. I am LA positive.

Lure2 in reply to minnime63

Hi Minnime63,

I am also LA positive and have selftested for 3 years now. Like Mylafont (also LA positive) you must doublecheque with the lab result for quite a time. For me ( it may be individual) the machine INR value is 1.0 higher than the vein test at the lab. Important is that it is Always the SAME DIFFERENCE.

It can be a discrepence with an INR of 0,2 - 0,3 but that is quite ok (Roche-specialist, my Hematologist and coagulation expert knows this). If the INR is high the discrepence is higher perhaps 0,2 or 0,3.

Remember we are all different!

There are other anticoagualtion drugs also. Some members here use Fragmin.

Best wishes from Kerstin in Stockholm

Hello. I was diagnosed 2 days ago with Hughes Syndrome and I cried. Not in fear but in not that someone had finally found out what was wrong. See I live in Colorado in the USA and all my life since childhood I've had pain in my limbs heavy menses, a child born at 24 wks due to eclampsia another at 27 wks at 21 yrs that lived. At 32 I got a clot in my illiac artery and since last November I have had a splenic infarct, PE and small renal clot. My docs kept saying all that was wrong was my anticardiolipids were high. Well guess what? THAT WAS THE ANSWER!! It took me demanding to go to University Hospital where Dr Jill Schofield took one look at my history,my skin and diagnosed me in 5 min. I am beginning treatment and so excited to reclaim my life at 38. God Bless you Dr Hughes for giving people like me and even my mother who was wrongly diagnosed with MS our lives back!

So sorry I didn't realize I posted my story in your replies. I was on warfarin as high as 50mg a day. While it's the first most docs go to Eliquis has proven more affective in studies and guess what? No monitoring. You might talk to your doctor.

mylafont in reply to medlock62

No problem posting your story. It's in our stories that a lot of us find answers. I like the idea of no testing or diet restrictions, but still afraid of the "eliquis" type meds not having antidote for big bleeds. I'm somewhat new to APS and still researching all my options. I haven't ruled out eliquis or the like, just not comfortable enough yet with it.

I am similar to daisyd and am also positive LA. But self testing works for me with the coag XS and I wouldn't change now.

Blessings Ann

Professor Hunt talked about the lack of an antidote on patients day, but I can't remember exactly what she said. It would be on the transcript

mylafont in reply to london-lass

Is there a link to the transcript.

My INR is as erratic as any i have ever seen.

They test my INR ever 3 days when i am bouncing up and down ,we don't change the dosage much if at all because Warfarin has a 3 day 1/2 life. So we are just making sure i am not to low as i have a lot of other medical problems that it effects .

I can go from a 2.4 on Tuesday and a 9.1 on Friday !!

My range is 2.5 to 3.5 but i have my PCP trained so we don't get to excited until I am up around 5 as of my other issues that are controlled by my other DC's .

I see 25 different Dc's , some i see every year , some ever 9 months ,some 6 months, most i see every month.

I can't use the Machines for self testing because of the LA .

I am a APS triple positive -- Primary - male

I also deal with 23 Dia. problems -- Most APS related but not all .

mylafont in reply to jetjetjet

What does "triple" positive mean? I am also LA positive, but am parallel testing in the lab to see if I can get enough consistent difference to rely on the machine. If not, I will give it up.

I am naturally APS positive and high elevated in anti- Beta 2 glycoprotein and anti cardiolipin IgG and L. A. positive.

and I could go on with the remaining 24 others .

The Dc's sum up my Medical problem list as a " Medically Complex Patient "

I am positive on those 3 as well as other autoimmune and ANA too. I didn't know it was referred to as triple positive.

jetjetjet in reply to mylafont

You are the 3 rd that i have heard of .

I have been self-testing for 10 months now---once a week, and it works fine. I call in the results to Alere (the home monitoring system) and they in turn fax to my doctor. If within range, (2-3.1) my doctor's office doesn't call me--out of range, they call and we discuss to see whether to adjust with dosage of warfarin, or diet. Unless you are so inconsistent with your INR numbers, I believe once a week is sufficient. I would not be comfortable waiting 2 to 3 weeks, even if the numbers have been consistent.

Good luck!



google HSF patients day. Beverley Hunt's talk

it was submitted on here by a member, but I can't find it.

mylafont in reply to london-lass


Having been on Coumadin for 15 years, I know pretty well when I am in range by how I feel.

I really don't get tested more than once a month unless my INR falls below 3, when the best range for me is 3.5 -4.

I have not been able to figure out how to get the self -testing machine

I can give you the info. But you have to know that if you are LA positive the machine is not going to give you an accurate reading. It's usually a little higher than a vein draw.

I'm currently parallel testing to see if the difference are consistent enough to rely on the machine and get to a point where I'm lab testing once per month or less.

What's LA?

Yes, please can you give me the info. I'd appreciate that.

I'm wondering if I can just get it at a surgical supply store since I have a prescription.


Lupus anticoagulant.

I go thru Roche. But the prescription came thru my coumadin clinic. Try 1-800-780-0675 and ask to speak to a representative. This is who I contact after getting the machine but I'm sure if this is not the right number to get you started they will get you where you'll need to be.

Alere (spelling?) is another company that does this too.

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