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 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)?

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 🌈

[gilders]

Hi, I have Wegener's Granulomatosis (GPA) which affects the small blood vessels. I have had 4 episodes of blood clots (deep vein) and suspected pulmonary embolism. The reason I believe there is a connection between vasculitis and blood clots is that my blood clots have occured during periods where my vasculitis has been active/flared. Admittedly, I'm probably less mobile when I'm flaring, but I still believe there's a connection.

[Hoofprints in reply to gilders]

Thank you gilders. I believe there is a connection too. Going by the state of my joints, I have been flaring for weeks now and had no problems with the leg until after the problems with my ankles began.

Ironically, my thigh muscles, which are normally so weak I can't walk much, have been stronger recently ( no idea why) and on a 2/3 days I was able to walk much better as a result in the sense that my legs were not giving way. So it feels particularly cruel that the clot developed now when I was more active than I'd been for a while!

I'm sorry you have suffered so many problems with clotting. Hopefully you have some medication that will prevent that going forwards. Take care 🌈

[AmyS1]

Vasculitis does iincrease your risk of clots check re your HRT patches may reduce the risk of clots compared to oral HRT but your Dr should check this.

[Hoofprints in reply to AmyS1]

Thank you. I have questioned the HRT (oestradiol in gel form and progesterone tablets) with the hospital doctor treating the clot. He said to stay on it for now and it will be discussed and assessed by the haematologist at the outpatient appointment. But as that appointment won't be until 3/4 months time, I am a bit concerned about staying on it without considered input for all that time. Trouble is I was in such pain before the HRT with symptoms that I would not have associated with the drop in oestrogen. I'll discuss it with my GP. Thanks for your help.

[EdieBD]

My d dimer levels raise during bad, bad flareups. Clots were not located, however.

[Hoofprints in reply to EdieBD]

That's interesting as the reverse seems to have happened with me. My d dimer was normal and in the past I have tested negative for antiphospholipid syndrome.

I hope you remain clot free. Thanks for replying.

[Haggiss]

Hi Hoofprints

Sorry to hear about your problems. I have had Wegners Granulamatosis since 2008. The 2nd flare up I had in 2014 they noticed a blood clot in my internal jugular vein. They think this was caused by the WG. I was then put on Warfarin, after several scans the clot was still there. With the clot not shifting I was told i'll be on warfarin for life then in 2018 they switched me to Apixaban as they couldn't get my ENR level within the zone and I was on 40mg of Warfarin.

So the answer to your question I do think there is a link between vasculitis and blood clots.

thanks

[Hoofprints in reply to Haggiss]

Haggiss thank you for replying. I am so sorry that you have had to deal with a clot, especially one in that location. It must be frightening as well as extremely frustrating that it won't shift. Has it reduced in size since the apixaban? I hope so. I also hope that you have managed to have proper monitoring during the shielding period.

Forgive my ignorance, but I do not know what the ENR rate is. Is it a blood test? Just wondering if it's something I have had, or should have tested.

I wish you and all on this site a clot- free future 🌈

[Haggiss]

Hi thanks as far as i'm aware the clot won't shift now. It's basically like a blocked pipe and I've been told that other pathways from the brain have opened up to compensate for this. Sorry its INR not ENR (The international normalized ratio (INR) is a standardized number that's figured out in the lab. If you take blood thinners, also called anti-clotting medicines or anticoagulants, it may be important to check your INR".). If you are on warfarin this rate in simple terms is the thickness of your blood (how quickly it clots) higher the rate the slower it clots so they put you on a blood thinner to increase the flow and to slow down the time it takes to clot. When on warfarin I was getting this checked every week as one week it was 1 (so an increase in tablets) and the next it would be 5 (then a decrease in tablets) so they stuck me on Apixaban this apparently keeps it steady (I don't know how) so you don't need testing and the dosage remains the same.

Thanks

[Hoofprints in reply to Haggiss]

Thank you for explaining this. I will phone either my GP or the hospital to check this is something they are on top of.

I'm glad your body has found an alternative plumbing route! I have always had such respect for the human body - it has a remarkable amount of adaptability and resilience. However I must admit to not feeling as if I have either of those two qualities right now. I guess that's par for the course when you have felt so unwell for so long.

Take care.