Antiphospholipid Antibody Syndrome (APS) - SAY NO to Home INR and Finger Stick Machines!!

I am post op and there's been some "difficult" communication between hematology and surgeon, so agreed to hematologist who monitors with no INR machine on site. It's an oncology center, the other hematologist sent me to Cardiac Center.  My surgeon, a GYN says the INR machines are not nearly as accurate as doing the full lab (from blood draw from vein).  Is that the consensus in medical community?  Oh, and before anyone suggests I see a rheumatologist, I am in a part of the country where I believe I can safely say the rheumatologists are ENTIRELY unaware of APS being the realm of Rheumatology, even when I bring in Dr. Hughes publications and tell them about the very first podcast in the Oxford JOurnal of Rheumatology (they send table of contents to mailbox free for creating a login, and then sometimes TOC links to something really good like the podcast a few months back.  I simply get blank stares and referred to hematologists who are primarily oncologists, even though they believe they are fully aware of APS, the hematologists I've met here (3) firmly (let me emphasize FIRMLY) believe that APS is asymptomatic, and if they aren't going to listen to their own colleagues in other parts of the world, why would they listen to a 'mere' patient like me?  It's very draining to try new doctors, hear them say they know all about APS, and yet no nothing of the discussion content here in this forum or in the International Community.  I guess few decades behind.

Right now I am having bleeding because my INR got to 3.9, and pain with it, which I am not sure is from the laparoscopic total hysterectoy (took ovaries too). 

So, dear group, what is your believes on INR accuracy and, when in geographic part of USA that hasn't a clue APS belongs in Rheumatology, where is the next best place to be monitored: a cardiac center with an INR machine or an oncology center that doesn't own a single INR machine.

I am now on my second Coagucheck machine and as far as I am concerned, their use has not only been of immense convenience but has probably saved my bacon on a number of occasions.

I had a bit of a fight to get my first Coaguchek X but when I arrived at the surgery after rehearsing my arguments, the doctor said she had changed her mind as her father had started using one. It was agreed that I would have periodic checks through the surgery/lab tests, to see how they compared with my own home testing. There has never been more than 0.2 difference, more often less. The makers of the equipment say that a small difference is not unexpected.

The NHS pay for my strips, I bought both machines. I went on to the XS updated version because it was smaller, and the strips do not have to be kept in a fridge. Also with arthritis in my hands it is easier to use.

I recently had to have some teeth extracted and I needed to have my INR not much above 3.0 They didn't want to rely on my results and brought out their own machine - an older Coagucheck X! Their result mirrored mine exactly.

I know of some surgeries that use the Coagucheck machines for routine INR tests so the word is spreading slowly.

Roche do indeed say that in some cases the machine may not be suitable for APS patients. Because of this Roche let me try one for several months to make sure I was suitable and would get consistent results. I did.

When I saw Prof Hughes privately recently, he was very pleased that I was using the coagucheck machine and encouraged me to check my blood every two days or so. That would be impossible without home testing if I wanted a life- and a real pain for my surgery. Following my closure of PFO procedure my coagulation has been monitored even more closely in the first instance - I am sure all at my surgery were very pleased to be able to know how my INR was behaving just by ringing me. Fotr me, having a result in minutes is far preferable to waiting for up to a week (by which time it can be too late) It has been proven accurate and allows me to get on with life.

I am aware that the accuracy is not the only issue, there are politics involved and issues to do with letting patients have some control. At the moment I am perfectly competent at taking the test and working out what dose of warfarin to have. Not all are so fortunate. Encouraging more to self-test would have an effect on lab budgets!

On the subject of self testing vs lab testing, one important factor is what happens with the results. Many surgeries use a computer program called INRstar. To my mind it is potentially the most dangerous aspect of INR testing. If you are self testing then I suggest that you either get out of the INRStar system and work out your own doses, or if you cannnot, then you make sure that your surgery feeds in the right data every time (this can be tedious for them). Assuming, incorrectly, that you have taken the dose that the INRstar program suggests can lead to inappropriate suggestions for future doses. They say garbage in garbage out but nothing in can also mean garbage out.

Finally, on the question of Heamatologist vs Rheumatologist, I guess it depends on the individual doctor. I've stopped seeing the haemotologist, we had different ideas on what was expected from the relationship- he considerd his role was just to monitor my INR. He had not accepted my argument for an INR above 2.6 even after being given Dr Khamasta's paper that advised people with my history should be above 3.0. Whe the stroke consultant upped it (after three TIAs) he used the same study to justify the raise. The Lupus unit at St Thom's (where Prof Hughes was) seems to be made up of Rheumatologists  from what I can see - that tells you something.

I know Clair that my experience is of the UK but hopefully it may be of help. I have spent about £750 buying my two machines (and got back £100 selling the first on EBay)and I get the strips, (which are about £2 odd a time), free but, if push came to shove, I would finance the whole thing myself if I had to. With my medical history, my life depends on self-testing as far as I am concerned.

It does seem to me that doctors who know much about APS support the self-testing for those who can manage it.

I can only speak from my own experience but I've had way more accurate readings when a vein was tapped and the blood sent to the lab than trying the handheld INR machine. I assume that's the machine you're referring to? I tried the handheld INR machines and got wildly inaccurate readings when I tested along with the blood draw in the lab (i.e. INR Machine said 6.1 and the vein draw said 2.6, huge difference).
Where do you live? I'm in Washington DC and am seen/treated by the heads of hematology at two hospitals here. Is there anything I can do?

I just started warfarin a few months ago and have yet to have a match between INR machine and vein stick. They've been off as much as .5. So I tell the dr I want to continue with vein sticks. I explained that the Coagcheck machine says IN THE DIRECTIONS that it is not accurate for APS patients. The reagent used on the test strips interacts with APS antibodies and produces inaccurate results. I doubt seriously that I'll ever home test, unless the manufacturers of the machines figure out how to make them accurate. I have three kids to raise, I'm not taking any chances with my health.

I'm in Memphis TN. I haven't had too much of a problem finding good doctors who understand APS. But my first hemotologist refused to try anticoag treatment for symptoms outside of pregnancy. So I went to another one, who I just love. She's terrific. She's also a cancer doctor. I don't think there are any hemotologists here that aren't cancer doctors. My symptoms are primarily neurological, so I don't need a rhuematologist. I may eventually end up seeing a neurologist, but so far, I've been stable. I found out about my APS after three miscarriages. I got treatment and had identical twin girls in April.

I hope you get it figured out and find a good doctor. It makes a huge difference haven't doctors who understand the illness.

I have the Coaguchek XS (Roche) INR machine which I bought in 2008. For several weeks I had the chance to compare results from lab and the machine, with blood collected for both tests with no more than one hour difference.

What I can tell is that in my case, and this can be different from person to person, machine and test strips calibration, results were pretty accurate when INR ranged between 1 and 4, with less than 5% error. If INR was above 4, error was of the order of 10%, but still gave a direction that things were not right and needed adjustment. I haven't been requested to take any lab test since late March this year and am relying on my machine results only and on a balanced diet to keep the same dosage. Doctors in San Antonio, Texas, seem to rely on results from these machines too.

Hi, there is a real problem with both laboratory, clinical level machines and the home test machines. The problem is that all machines currently in use use the Prothrombin Time Test (PT) or the activated PT (aPTT), which can produce a false high reading on 20% of the patients who have active Lupus Anticoagulant test results. When these 20% have lower antibody activity levels the machines will read perfectly normally, however it is difficult to know if it is a high INR or a false high reading as the LA test is virtually never done at the same time and with the same blood draw, so the proof is very difficult to know whether the result is accurate or if the INR is high.

Laboratory tests will also rely on the PT or aPTT and will also give the same false high under the same circumstances. Patients with 'known' LA activity have to have their anticoagulation tested by a totally different method and the laboratory will have to be told that the patient has active LA for them to break away from their normal test procedure. If the laboratory is told the patient has APS, it is not enough information for them to carry out different tests, they have to be told exactly that the patient has high LA. Remember the laboratory staff are not doctors and have full training in the machines and test procedures but rely on the doctors asking for the right test, or else they just stick to the tests corresponding to the colour of the top on the blood test vial.

I do have active LA at times of a flare in my APS, and that has caused false high INR readings from my Roche Diagnostics CoaguChek machine, which agrees with every lab test I have ever had done (to within 0.04 of a variance as the home machine will round up or down to one decimal place). In these cases I am usually quite ill, so I assume the result to be high and carry out retests for a few days until I can be sure the INR is high  (and not false high) before changing my Warfarin doses. This has happened twice this year and the first time the INR corrected itself after three days and the second time (last Sunday) I had to change my dose by about 25% for a couple of days before the INR returned to normal.

I hope this helps a little in understanding how my machine can be accurate 50 times this year (out of 52 tests) and was 100% accurate for the last nine years compared to three times a year correlation laboratory tests.

I'm so sorry for everything that you are going through. I completely understand what you are saying it seems as if you can add Tennessee to your list of doctors who won't go the extra mile.

As for the the INR machines - well I had a machine some time in 2002 and it kept giving me error messages because of my antibody levels.  This past year at the Army base I was getting my blood checked there with a machine (and lab for the 1st couple of times) and it was pretty much on point.  They might have worked out most of the kinks with the new models.  My doctors keep my INR between 3 and 4 so if a tech doesn't know that they might think it to be an error.  Personally I have really small, hard to find veins so the machine was a relief for me.

All quotes taken from APLSUK & APS-SYNDROME…both yahoo groups. Happy reading!