Miss Diagnosed?

[Karen56]

I was diagnosed 5 years ago with APS. Positive on both tests 12 weeks apart. I was just tested again by a Hematologist 12 weeks apart and tested negative. So was I on blood thinners and Hydroxy for 5 years for nothing? I don’t what to think.

[Raw57]

Dear Karen, this is one of my unfounded fears but from what I have read in the post is your antibodies fluctuate over time but you still have APS. You doctor is the one to ask about your results. Hopefully your hematologist will be able to advise you soon.

[Karen56 in reply to Raw57]

Thank you. I do have an appointment with him tomorrow.

[MaryF Administrator]

Hi, it is confusing, but to be clear, Hughes Syndrome/APS does not go away, but antibodies and results can come and go, negative/positive at different times. Stick with it. MaryF

[Lure2]

Hope you have an Hematologist who is an SPS-Specialist and who knows this APS-fenomen.Did your present Hematologist ask you to stop your anticoagulation as you were negative this time? What anticoagulation was it........ Warfarin?

Were you positive to one or two or all three antibodies they test in your blood for APS?

[Karen56 in reply to Lure2]

I was positive with both tests 5 years ago. And negative to both tests this time. I am taking Plavix now and he told me to keep taking it until our appointment tomorrow. I just wanted some feedback from this community before going in tomorrow. I stopped Hydroxy months ago do to side effects. The APS specialist I had 5 years ago doesn’t take any Insurance anymore.

[Apples2000]

Oh wow. I can empathize with you. I’ve wanted this to go away but I’m scared I will have another clot if taken off warfarin. Will you keep us posted?

[Karen56 in reply to Apples2000]

Yes I will.

[KellyInTexas Administrator]

Hello Karen,

I tested positive ( weakly but positive) both times initially, “earning” myself a diagnosis, and clotting with a DVT at the same time as the second test result came back.

Then… negative the next testing batch.

Then positive….

This went on for about a year - now I’m always positive- low to moderate numbers.

I am a very prolific clotter- to the point of needing rituximab.

There is not always a correlation, although very often there is.

[Vespa1]

Hi I was interested in reading your reply as that is the case with my husband and even when his INR is at 3 he clots and I couldn’t understand that. He was also tested again after having a stroke and having the clot busting drug and was negative in tests sometimes trying to get doctors to understand where you are coming from in it doesn’t go away and your more prone to clotting is very challenging and dismissed as a difficult patient and told to leave. We have had to carry on on our own and this sight is so helpful even 12 yrs on. Thank you