jetjetjet

Hi Greg - I have an INR range of 2.5 to 3.5 - I test my blood every three days-not that we change my Dosage every time BUT i can go from a 2.4 on Tuesday to a (.1 or better on Friday . I take jantoven { generic Warfarin sulfate } I usually take # 4 and #5 's .. But when it plummets i have taken up to 10's--some times we increase dosage and my INR drops. Do you have a hematologist if so I would start there . This is what i did - it took some time and i had to prove to her that i am more apt to clot than a bleed .And i used my very first surgery notes from my surgeon to prove my point . And my erratic INR's helped also . I was found to have both lungs with clots [R] clusters all thru it and [ L } a massive clot across entire bottom over an inch thick . and that was Sept 1 and on Sept 2 ND they found clots in left groin -behind left knee - under [ l ] arm and [L} side of neck . Feb 17 TH a Dia. of lupus Anticoagulant was handed down .{that was what it was called here then . But soon after they changed it to APS .I have ha the erratic INR from day one though .I am an APS triple positive primary .and an INR nightmare LOL

Gregstock in reply to jetjetjet

Thanks

for the reply and information.

I just got a new Hemotoligist due to the original one leaving the hospital. First appointment is in 2 weeks. Hopefully this person will be of help to me.

Interesting, like you I was originally told I had Lupus anticoagulant after my stroke. Then later they told me it meant I had APS. They did a second Lupus anticoagulant several weeks later and it was still positive. They also did another test called anticardiolipin which also was positive. I have not had the third test called glycoprotein I (β2GPI). You said your triple positive for APS. Does this mean you are positive on all three test or is it something else?

You say you test every 3 days.

I assume you must have a finger stick device. I tried a coagchk XS and indicated my INR was 5.0 on the same day within an hour as my blood draw indicated 2.4.

Tried several more times with the same inaccuracy. Then I learned that Roche does not recommend the finger stick machine for us APS people.

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zzcat in reply to Gregstock

Hi there

Just a quick question, where did you learn that it is not recommended to do the finger stick machines if you have APS?

Thanks

Susan

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Gregstock in reply to zzcat

I think it was Roche I called and learned they do not support the machine for people with APS.

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zzcat in reply to Gregstock

Ahh, ok. That will just mean it has not had testing with that condition. No problem, thanks for your speedy reply!

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Lure2 in reply to Gregstock

It is when we have Lupus Anticoagulant in our blood. If we get a high INR around 3.5 - 4.0 (the level we feel best at, at least not under 3.5). On the higher INR-numbers the readings may give a false answer.

I live in Sweden and I am so lucky to be able to take both vein-test (the only bloodtest that is reliable) and selftest in the finger rather often (every second or third day). The fingertest is always higher than the vein-test. Therefor we need to do a parallelltest of fingerprick and vein at the same day with not more than perhaps 3 hours between the tests. Then we can find out if the difference is the same between the two bloodtests. I use another machine than the CoaguChek XS at present and the differense is about the same every time. Then I know my INR when test at home. Perhaps 4.5 in the finger and 4.1. in the vein.

When we are triple-positive we are positive to all the three tests they do to diagnose APS.

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KellyInTexasAdministrator

That’s the difference in the USA vs U.K.

I’ve had a very interesting experience with my testing strip debacle here.

LWDP

Hi there. I'm in USA and recently got my doctor to up my recommended INR level to 3.0 - 3.5. I did this by taking in a copy of Dr. Hughes' recommendation of 3.0 - 4.0 as necessary for some of us to feel better. It's hard to get US docs to admit the possibility, let alone the presence of micro-clots. I'm using an at home monitor but have to call it in to my INR clinic every week. Once or twice a year I go in and get my blood tested to calibrate that it's close to what it ought to read. INR is not an exact science and many things can affect it. For instance, my meter will read differently if I hold it than if I lay it flat on the table.

KellyInTexasAdministrator in reply to LWDP

Alere? That’s the “ managing clinic” within Roche, correct? They call your doctors office?

It’s not nearly often enough for many of us with extremely volatile / unstable fluctuating) INR.

I’m having a complete nightmare of a time.

I’m in an epic battle with Roche. They are hounding me to the point I had to tell then to quit calling me- that it was verging on harassment. Its because the strips are so unreliable right now.

I was very nice and simply wanted to buy strips that were batch 299 or under.

Let the water boarding begin.

I’ll regail youvwith details in a sec- child just walked in from school-

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NorrieW

The US doctors are taught that an INR is 2-3. This INR is fine for atrial fib or valve replacement. I tend to clot anything below 3.3 so I had to take responsibility into my own hands and told my internist that I was setting my INR targets to 3.5 to 4.5 after I had researched Hughes Stiky Blood Syndrome. I am a retired cardiac nurse so I was able to gain access to local hospital medical library's journals. The Mayo Clinic in Rochester MN has only one doctor who has experience in Hughes/APS. There are a couple of docs in private practice in Shreveport, LA who market themselves as APS hematoligists. My suggestion to you is to join the Facebook page for Hughes. Many articles and research data available.

I was extremely fatigued until I went strictly on the AIP diet plan for autoimmune disorders. That gave me my strength grh nd energy back, but no cheating or you lose all benefits. It's not a diet you can go off of when you want a piece of cake. Commit to following it strictly. I have been on it for 7 months now and I am back to my old self.

So increase your INR and research Hughes but still work with your doctors to re-educate them. Eat the AIP diet strictly! I felt a change in my cognitive function as well as energy levels after 1 month. It gets better the longer you stay on it.

I take warfarin 10mg, I eat plenty of greens that stabilized my INRs. Good luck.