Blood clots and urticarial vasculitis syndrome

[Hoofprints]

Hello everyone. I hope you are all feeling as well as can be.

I wondered if anyone could tell me whether they have suffered blood clotting as part of lupus/ urticarial vasculitis syndrome ( or any other forms of vasculitis actually, as I'm not convinced that I only have the one type affecting small blood vessels)? My urticarial vasculitis syndrome is being treated as lupus.

I am just over two weeks into a trial of colchicine, which is giving me no noticeable side effects, but which has not prevented more joints swelling up and being painful. However, I noticed calf swelling last weekon my left leg, following on from 3/4 weeks of ankle swelling and pain on both sides. I got checked at the hospital and am now being treated for deep vein thrombosis. I'm taking apixaban. The clot is in a smaller vein rather than in the large veins of the leg.

I know as I am bed bound a lot of the time, but with the occasional period of walking better, that I am at more risk. I am also on a low dose HRT and have been without any complications for the past 4 years.

The only other thing I had started to take over the last week was a vit D spray that also has vit K2 in it (had read on the forum the K2 was good for getting the calcium taken up by the bones and not deposited in the arteries).

Is this problem with clotting part of the vasculitis picture anyway? Just trying to get my head around what my risk factors might be as I have to wait around 3 months for a haematology outpatient appointment ( assuming I get seen at all if COVID is spiking).

I was tested in the past for antiphospholipid syndrome and was told the results were negative. I've had more bloods taken to check this again but don't know my results yet. Can you test negative with this lupus-like syndrome and yet suffer these problems with clotting?

Thank you 🌈

[LesJames]

I was diagnosed with APS by Professor Hughes I am sero-negative. I do know it is very difficult to achieve.

[Hoofprints in reply to LesJames]

Wow- you were diagnosed by the best. So sorry you have gone through so much too.

I think my problems have all largely been sero negative, hence misdiagnosis/incomplete diagnosis for years.

I shall raise the issue of there being sero negative cases of APS with my doctors - thank you for sharing that and taking the time to reply. Take care 🌈

[LesJames in reply to Hoofprints]

I went to him privately because I could not get ay sense out of any locally. Best wishes

[Hoofprints in reply to LesJames]

Ah...I see. It has taken me over 20 years to get a correct diagnosis and I still don't think I have a complete one.

Do you mind telling me which hospital he practices from as if I get nowhere with answers at my haematology appointment, I might consider doing the same.

Thank you

[LesJames in reply to Hoofprints]

Sorry for the delay, I saw him at The London Bridge Clinic. I am not sure he is linked to a Hospital now.

[Hoofprints in reply to LesJames]

Thank you. That's good to know. Take care

[WinterSwimmer]

I had two clots last year. I am negative for antiphospholipids and also for lupus anticoagulant. The clots were related to untreated nephritis - my serum albumin was very low and this can cause clotting (I was told by several doctors - I am not an expert). I am now getting treated for the nephritis and have not had a recurrence of the clotting so far. My serum albumin levels are normal. I don’t know if this information is of any use to you but I hope it is.

[Hoofprints in reply to WinterSwimmer]

Thank you so much, it is very helpful. It is another avenue I will chase. My anti-c1q antibodies were quite high when tested at 132 last October (they have never been checked again, only the once) and I have worried that this puts me at risk of nephritis. I was told my bloods were looking mostly good at the hospital last week but think I need to ask some more specific questions as the 'mostly' bit is slightly worrying.

Do you mind me asking what they treated you with, both in regards to the clot and the nephritis ?

Thank you for your help 😊

[WinterSwimmer in reply to Hoofprints]

I take mycophenolate for the nephritis. Heparin for 6 months for the clots. Now aspirin. What you have sounds very different. I hope you get an answer soon.

[Hoofprints in reply to WinterSwimmer]

Thank you. I have been told I cannot have mycophenelate or any of the stronger immunosuppressants as I also have an immune deficiency. Not sure where this leaves me....we shall see!