recently had aps diagnosis after stroke.
Trying to get my inr to 3.5. Dosage keeps going up weekly but my inr has dropped! Diet exactly same week on week. Slowly getting more active though. The poc inr vs venous has been between 0.5-1 different.
Has this happened to others? Is there any reason it’s so big besides aps - can I do anything to have it smaller? I want to be doing this at home but they said if gap too big I won’t ever be able to!
This happens to many of us with big differences between fingerprick test and a bloodtest in the vein at the hospital lab. The test in the vein always gives the correct INR at that special moment.
Especially if we are triple positive with positive Lupus Anticoagulant (LA).
LA is a trouble and makes our blood going up and down very easy. Erratic.
I test my blood with ILine Microsystems and not Coaguchek XS as that machine started to give false numbers and perhaps a difference some times with up to 1.5 in INR. My therapeutic value should be kept between an INR of 3.5 - 4.0 and if it drops under 3.5 I shall have a shot of Fragmin. My Hematologist at the Coagulation clinic at the hospital in Stockholm wanted me to change to another machine that suited me. This one is much better so I can take a veintest only every 2 or 3 months perhaps or whenever I take other blood tests at the hospital lab. I trust my machine and know it is a little bit high only 0,2-0,3 and that is ok.
I am triple positive with LA positive and have also high titres and have always had since I started Warfarin in 2011. We are all individuals with this APS. Some have only one antibody of the 3 positive and those may perhaps need a lower number of INR. We feel when the INR is too low usually when the symptoms come back quickly. Try to learn as much as you can. Very important to have a Specialist !!
Many here have other autoimmun illnesses together with APS as they often go hand in hand like SLE/Lupus, RA, Sjögrens, Thyroidea illnesses.
I take a fingerprick test very often (several times a week as the INR goes up and down) and I monitor my own INR myself after several years and I do not change my dose much as that takes several days before that works and when it works it can be a lot too high or too low INR. Usually take 1/4 of a tablet more or less but what is important for me and for all of us as a fact, is that we eat greens at the same amount every day. I follow my INR and when it is too high one day I eat a litte more of the greens. It is very important that you do notes on a paper about the date the dose and the INR. You will learn how your body reacts on it. I can take more brusselsprouts in the morning if the INR is too high and in the evening it may have been back to normal. It takes perhaps 10-20 hours. If you change your Warfarindose it would take perhaps 2-3 days.
Remember we are all unique with difference symptoms and types of APS. I have spoken here with many people with APS and we know that we need to eat the same amounts of greens to keep a stable INR. I use those greens to alter my INR when I have tested in the morning and if it was a bit too low I eat very little or no greens at all in the evening. Then the next morning I see a new number and know what to do that day. It takes some time to learn the body. Notes is important.
This was a long one. I guess y ou have read "Sticky Blood explained" by Kay Thackray. If not do that. Good Luck and talk to the Specialist. I do not even know if you are triple positive with LA positive.
Hi Lure2, Thank you so much for explaining in so much detail. I have 2 positives antibeta2 and anticardiolipin - which from the sounds of your note its usually triples where the differences are so large? This is really scary and I hope it gets better with time. I've not read the book, I will have a look into it. Thank you
Hi again,
Beta-2-glycoprotein1 can also make INR erratic. We are so different with out symptoms but the most important thing is to have a Specialist.
Talk to him or her. An Hematologist or Rheumatologist understand usually APS as they may work with other autoimmun illnesses and have patients like us every day. It can be a fight to get to the correct Specialist for us.
excellent! My mentor Lure who has taught me “The Art of Greens in INR Management”
Also that book, Eat on Warfarin is good. MaryF
Sand1985,
Hello,
I tried very carefully along with my GP and hematologist to safely use the coagucheck xs but it gave unreliable results.
I would even bring it to the hospital with me and test it at the same time as the phlebotomist would draw the blood. ( veni puncture- VP).
I’m aCL and B2GP1 positive, and intermittently LA positive as well.
We only do draw VP now.
After two years of being OK, I suddenly started getting a big discrepancy. I’ve had to change to blood draws/venous testing, rather than self testing. At the moment no sign of things settling down. I will try to see if the machine Lure suggests is available in the U.K, but at the moment I’ve got to live with regular clinic visits ☹️
it’s such a hassle, I know. I’ve been unable to get the same machine as Kerstin ( Lure2) .
Another issue is unknown minor infections. Say that person on the train with you sneezed in your direction. You may never catch that virus, or rather, you may never know because your immune system revved up and took those buggers down. Yeah! But because the immune system revved up your INR will fluctuate -despite your care in med doseage and diet. APS management requires PATIENCE! --Because we can't manage everything. .
I find activity levels affect INR a lot. More exercise -> lower INR, less exercise -> higher. Over the years I have found most of the things that affect INR for me - alcohol, diet, exercise, altitude, outside temp, weather, season, illness, other medication, stress, weight (as in mine), thyroid hormone levels, the list goes on. Often the effect is not the way you'd think, sometimes the direction even varies.
INR might as well go up and down randomly basically.
Eventually though you learn, hopefully, what affects it for you and by how much, and you may be able to predict and even counter some of the changes, without changing dose (which by the way is a very slow way to change INR compared to some of the above). Some things you can't control but some you can and you can use.
Difference fingerprick to vein varies with antibody levels (in fact since I;m LA+ve and you can't do that test on warfarin, it's basically the only way to know if my antibodies are flaring). I have had differences up to 1.0 and once went over that - but only temporary. Rules vary between areas, but where I am they will work with a difference up to 1.0 but above that consistently and you won't be able to self-test. I work with the clinic and have committed to certain management rules for me - e.g. if INR has gone up a lot and suddenly and I don't have a good reason why then I will go and get a venous sample before I take a dose reduction (because it's likely a false reading). Know your body, but be aware that knowing your body on warfarin may take some time, took me years to get as confident as I am now, and I'm still learning.
thanks ray, there’s so many variables involved! Is it the same case for example if someone doesn’t have aps and has some other condition that takes warfarin in the context of the difference between venous and poc? And the drivers affecting it?
So many variables is one of the core problems of medicine, sadly, and the biggest variable is us - we are all different.
I am not aware of other conditions that cause a difference between venous and fingerprick, it's possible that there are some, but I do know that APS is a big red flag for my clinic/service that means people have to have venous comparison samples when starting out. It wasn't always that way - when I started on warfarin the clinics here were just reorganising and switching to poc dosing, I did my research and had to tell them I needed comparison testing. To be fair, it may have been picked up further up the management chain even back then, but front line staff didn't know - they do now.
Hi Ray,
Very interesting what you write above! We learn so much from each other as we are the specialists of our APS. But we have to reflect a lot to learn exactly as you are doing. Good for you.
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