So confused...went to see a Vascular doc at a #2 clinic in the states...

[aburch]

Quick background: 2 years ago I had an unprovoked ( I was on birth control ) bilateral pe. I was put on Xarelto and tested positive for APS twice, 6 weeks apart. Went on living my life but felt like I wanted a good plan for the future and I was also feeling short of breath and having elevated BP.

Just went to the APS specialist/vascular doc at the #2 clinic in the states. Doc says he has treated 100's of APS people and I really liked him. He said that Xarelto can give a false positive for aps......so he wants me to go off Xarelto for 3 days and re-test. I will do this but now I am reading all these posts about how APS can go back and forth. Now what do I do????? He said I may still test positive even after being off for 3 days and then wants me to switch to lovenox and re-test again. I was super excited I may be able to come off thinners but now I feel more confused than ever. Are there any medical journal articles to support the positive to negative issue.

Amy

[MaryF Administrator]

I would be asking him to put you on something else while he tests? With your history perhaps not a good idea to be off it for 3 days, He could prescribe you Fragmin shots. I would insist on this before coming off your other medication. Remind him very carefully of your medical history to date, plus current and recent symptoms. MaryF

[Lure2]

Hi,

If you have tested positive twice you have APS. Antibodies can go up and down. Some members are sero-negative for a while and retest and then positive.

I wonder which antibodies that were positive. All three? You should never ever stop anticoagulation not even for 3 days. As Mary says he could prescribe Fragmins-shots to take.

With your history (a bit like mine as I also had very high bloodpressure and PEs) you should be properly anticoagulated all the time. See to it that you get help with reducing your bloodpressure as it may well be a symptom of APS. Ask the Doctor if he intends to do an Ecocardiography with doppler on your lung/heart?

Best wishes from Kerstin in Stockholm