Unprovoked DVT - possible APS

[Zara-LouiseD]

Hi Everyone

I was diagnosed on Tuesday 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!

[Hoofprints]

Hi Zara.

I have only just spotted your post.

I have urticarial vasculitis syndrome, which is a lupus like disease, and last October developed a DVT in my posterior tibial vein. I was treated with apixaban and remain on a permanent low daily dose (2.5mg twice daily).

I didn't test positive for anti cardiolipin and was not diagnosed with APS, although question whether I have a sero negative form. What I did have was sudden joint swelling in my ankles and wrists, shown to be inflammation in ultrasound scan, and that inflammation/swelling spread up my legs in the sift tissue, particularly the left where the DVT then appeared 3/4 weeks later.

I did not notice any more headaches or joint pains over and above those I was experiencing when I started apixaban, so cannot be of huge help there.

The cause of my DVT I believe is related to the vasculitis I have - I'm hoping for a second opinion to clarify whether I have other vessels apart from small vessels affected. Have you been assessed for vasculitis? If not, I would encourage you to talk to your doctors about this as a matter of urgency and lookup/contact vasculitis.org.uk - John Mills and his team there are very helpful.

I tested positive for anti-C1q antibodies and then got my diagnosis. I'm on hydroxychloroquine and colchicine and my antibodies are at normal levels now, although my symptoms are not!!

Unfortunately there seems to be an awful lot of overlap with these conditions. Getting the right help as quickly as possible is crucial. The vasculitis charities as well as Lupus UK and the people on this forum can support you. Please don't consider coming off the anticoagulants though, even if you are feeling rough on them as you need to avoid further clots

Good luck and keep us all posted as to how you get on 🍀🌈🌺