Criteria for seronegative APS diagnosis

[Blakerm]

Is there a clinical / lab definition of seronegative APS or is it a subjective diagnosis? I had an arterial clot that took out kidney around June 2016, followed by a positive LA test in July 16. Doctor at Kaiser diagnosed as APS. They also did electrocardiograph to rule out a fibrillation, etc and heart was healty/normal. Cholesteral and all other clot drivers were fine (I exercise and eat healthy). I then had two follow up blood tests in September and December, both negative. I was in Minnesota this week, so I went to Mayo hematology Dr. They did the tests again. Dr Aneel Ashrani cited the 2006 Sydney criteria and said I do not have APS and possibly had some other incident such as trauma that caused clot, but I can think of no such incident. He has said maybe I should move to daily aspirin instead of warfarin. (To be fair, he is going to re-review electrocardiograph and scans before concluding. So... three questions:

1) Again, what is the clinical criteria for seronegative APS?

2) Are the updates to the 2006 criteria?

E3) When some of you have suggested " more tests" when a person is seronegative... what tests would these be? (I had the 3 blood tests that Mary suggested)

[MaryF Administrator]

It is very awkward this sero negative business. I was sero negative for years, including for Lupus, people can go in and out of positive/negative etc. I have now passed two out of the three tests on a regular basis now for Hughes Syndrome/APS. Professor Hughes has the best example, a couple of identical twins on is books one is always positive and the other negative despite both having the same symptoms, that says it all really. MaryF

[Yllek]

I don't believe there is a specific criteria- you just need a knowledgeable Dr of APS to fit the jigsaw together.

[AnnNY]

Dr. Hughes recommends a heperin trial for people have symptoms of APS who are seronegative. If people improve then he considers them seronegative. Also, there are "secondary antibodies" for APS, but even experts in the US usually won't test you for them (although you can always ask).

If there are any symptoms that have resolved on warfarin other than no more blood clots, I would bring that to your doctor's attention. For instance, I was surprised when my shortness of breath improved when I went on Eliquis. I'm hoping that if someone ever wants to take me off blood thinners, that this alone would make them think twice. (There were other things that got better, as well, such as my concentration and ability to read.)

I would go to the Hughes Charity website, and look over the many symptoms of APS, and see if you notice anything that has improved since you have been on warfarin. Sometimes, you forget that you got better until you remind yourself. For instance, I read the report my rheumatologist wrote about my symptoms before being anticoagulated. She wrote that I had numbness in my face. I completely forgot I had that! Also, I would research the "secondary antibodies," and bring in a list. Make your doctor aware that you know that Dr. Hughes and other APS experts believe in seronegative APS.

Here is one article about "secondary antibodies," but there are more than these:

ncbi.nlm.nih.gov/pubmed/235...

Good luck.

[Blakerm]

Thank you!

[Blakerm]

Thank you. Very appreciated. Its all a bit confusing.

Do you have any link to the "updated criteria"? Im curious to know what they changed.

I will trust your advise. I think the short version is: If you have had a positive test AND if you have had a correlated clotting event, you should assume APS to be safe. Correct?

[Blakerm]

I think this is abstract is related: journals.sagepub.com/doi/ab...

[Blakerm]

Can you comment on what was changed in the updated criteria (updates subsequent to the 2006 Sydney criteria)?

Would the "seronegative criteria" question be a reasonable one for the Dr Hughes question of the month, or has it already been beaten to death?