DRVVT test

[Blakerm]

I saw that a test a lupus anticoagulant test that IS confirmed to be valid when a patient is on warfarin is the "dilute Russell's viper venom time" (DRVVT) test.

Hope this is accurate....

[Lure2]

Hi,

Have you did the Lupus Anticoagulant - test before you were put on Warfarin? Other or the other two positive or all negative?

Best wishes from Kerstin in Stockholm

[Blakerm in reply to Lure2]

Yes. First indication was arterial clot feeding kidney. Second indication was a positive test for La. They then put me on warfarin and I remain on it. All three subsequent test spanning 9 months were negative. Both Mayo Dr and Kaiser Dr are both saying this confirms I am negative for APS and suggest moving to low-dose aspirin.

After several comments from the community, I am becoming skeptical this is accurate.

I think if I had one over-reaching questions it would be: "What is the bare minimum criteria for an APS diagnosis."

The reason for this is that I really don't have any of the other symptoms that I see people mention except hypothyroid and poor memory, and I have had poor memory since I was a kid. (i can re-watch movies and almost hide my own easter eggs! After taking warfarin I have had no change in these symptoms. I otherwise feel very healthy.

So for this reason, I think I have the least indication of APS of anyone on the board, ie a single clot event at age 52, one positive test, hypothyroid and poor memory. Nothing changed after warfarin for any of these.

In fact, I feel a bit guilty posting questions here because so many people on this site are in much worse shape than me, yet I tend to make more noise then they do!

[Lure2]

It is good that you make a fuss about taking away Warfarin after having a positive Lupus Anticoagulant and also a clot. They believe you do not have APS they say!

Did you have Lupus Anticoagulant-test after the clot in the Kidney (did you take part of it away?) but before Warfarin I guess?

I wonder if you have got high bloodpressure perhaps?

I am not medical trained but I have heard what others say and also prof Hughes and I also have Lupus Anticoagulant which is a strong evidence of APS. If I were in your shoes I would never let them take the Warfarin away. What therapeutic range is you put on and do you selftest?

Best wishes from Kerstin in Stockholm

[Blakerm in reply to Lure2]

Thank you for your feedback! Good questions... sequence looked like this:

1) Pain led to discovery of arterial clot to kidney in June 2016

2) Tons of test later (electrocardiograms, scans, stress tests, etc) they did the La test panel in July and it was positive.

3) They put me on warfarin. (goal of keeping INR at 2.5 to 3)

4) Went to ER with horrific migraine. Discovered my blood pressure was extremely high. (they speculated this was due to dying kidney sending bad signals). The controlled with blood pressure meds... I stopped taking them recently as my bloop pressure normalized (maybe kidney finally died and stopped sending bad signals)

5) Took two more La tests (October and January). Both negative. Mayo and Kaiser doctor referred to 2006 diagnosis criteria and said I am negative for APS and can go to aspirin. (Kaiser Dr was more clear about risks and uncertainty)

6) Yesterday: I messaged both of them and questioned the validity of the of the La tests given that I was on Warfarin.

7) Response from Kaiser was that I could go on aspirin for 3 months, then take the La test so I would have certainty.

Status: 52 year old healthy make. No prior clots

Positive indicators:

- hypothyroid

- poor memory

- father had rheumatoid arthritis

- headaches

Negative indicators:

- no clot till 52

- no improvement of memory or headaches with warfarin

- no other associated symptoms (sjogrens, rashes, pains, fatigue, etc)

only other oddball thing I have is a crazy anxiety thing with no cause I can identify.

If I had to distill all this down into my current simple question it would be this:

"Given that patients with a clot and positive La test are put on warfarin, and given that warfarin can yield false negative tests... how the heck does anyone use the diagnosis criteria of getting a second positive test 12 weeks later if the warfarin yields the test uncertain? !! " And how long does one need to be off warfarin to ensure the next La test is accurate?

Makes no sense...

Doctor is telling me to think about it and decide which risk i want to take... getting a clot in the next 90 days while we get warfarin out of system... then do another test to be "sure" or just stay on warfarin..

what do I do!

[Peecue]

Have you thought about asking for a second opinion? I have had seronegative tests but on low INR they have been positive plus I have had seronegative tests when on high doses of Prednisolone. Have you any other signs such as Livedo (skin that looks blotchy like corned beef pattern)? That was one of the deciding factors in my diagnosos)

[Lure2]

I do not think that you have been handled by a Doctor who understands APS. He would never tell you that you can decide for yourself if you want to stop taking Warfarin for a period and change to Baby-Aspirin and then take the LA-test again which you already have taken once. You have had a clot and you have got symptoms. Also relative with RA.

I would look for another Specialist who really knows APS before you do anything. Not stop Warfarin and also get the INR raised to at least an INR of 3.5. It is obvious they do not know what they are talking of.

Then the fatique and the headache will perhaps disappear or at least be much better when you are properly anticoagulated for once. You also have Hypotyroid and need a Specialist of Autoimmun illnesses like a Rheumatologist. Try to find one!

Kerstin

[Puska]

I had thought being on warfarin could give a false positive LA test, but you have had a negative test on it so that would suggest that APS isnt the correct diagnosis after all. But then there is seronegative APs which I know nothing about - not sure the Doctors in Australia do either but as I was always positive it was much easier for me. This testing regime on anticoags is really hard. I was on X and as that is out of the system in 24 hours then I could have the test before the next dose (at the 25th hour) and so the risk of another clot was minimised totally. But warfarin is very different. The sooner they devise a test to test people on anticoagulants the better.

Doctors here are quite dismissive of hypothyroid (hashimotos) even in young women. I too had livedo but the second dermatology opinion picked that up. I would be getting a second opinion as there are so many doctors who think they know about autoimmune stuff but have not kept up to date on the research.

[Yllek in reply to Puska]

My haematologist told me last month that being on warfarin and testing for lupus anticoagulant gives a false negative not the other way round x

[Blakerm]

Thank you everyone for the thoughtful feedback. Seems half the problem with the disease is that it is hard to get competent treatment.

I think this website (and probably others like it) are the best source of information and probably do the most to provide competent guidance and up-to-date information.

I think instead of spending more and more money on doctors, I will try to help support this site more.

Thank you VERY much to those who started and maintain the site and help many people.

[Wittycjt in reply to Blakerm]

They are a GREAT group, I agree, kudos to all of you here. Good job! 👍👍👍