Unprovoked DVT - possible APS

[Zara-LouiseD]

Hi Everyone

I was diagnosed yesterday with a thrombus in a vein somewhere below my collar bone which is causing my external jugular vein to distend. Apparently it’s in an extremely unusual high flow area of the vein for a clot to develop, and I initially was sent home with a clear CT until the A&E doctor decided to get a vascular specialist to review the CT and I was urgently called back the following day for an ultrasound.

They asked me which Covid vaccine I’d had, and although I did have the AZ, I’m slightly out of the parameters as it’s 36 days after my second jab and also no thrombocytopenia.

They took 7 vials of blood and are testing for APS among god knows what else because a couple of years ago I had a weak positive for anti-cardiolipin antibodies. At the time my rheumatologist concurred that I might have a mild connective tissue disorder (probably SLE) but laughed at me when I asked him if the weak positive might suggest I had APS or SLE and could it be the cause of the migraines that I’ve suffered since I was 10yrs old. He said it was only IgM and probably virally provoked.

They have put me on apixaban indefinitely and it seems to have caused joint pains that I haven’t had for quite some time - has anyone else experienced that with this drug?

So now it’s a waiting game to see what these blood tests come back with, whilst worrying if my clumsy self is going to end up with some serious bruising!