Has anyone else experienced thrombophlebitis as a problem with lupus? I know it is common in the general population but are you more prone having lupus?
My ankle hurt for three days and then it swelled , went red, hot and even more! Yet another thing to add to my medical notes!!!
Hello rubytuesday2
Yes, lupus is one of the known risk factors. I had raging phlebitis in both legs earlier this year. Like you, I had a few days of aching before they went nuts. There wasn't any doubt about what it was, as I could see the big veins running all the way from ankle to groin were bright red and horribly distended.
Luckily, I had the sense to get to my GP immediately, and she rang to have me admitted to hospital straight away.
It took about 6 weeks for them to go down, but I have to keep an eye on them now and make sure I walk a bit every day - if I have even a day in my chair, I can feel them starting to itch (a warning sign) and I definitely don't want them coming back!
Hope you're feeling better soon x
Hi Whisperit, that sounds very painful. I don't have any veins showing but the GP drew on me to see how it is Monday. You wouldn't think that such a thing can literally come from nowhere! It hasn't got any worse today, so fingers crossed. The joint is so swollen and stiff and the entire area is roasting and painful to touch. I hope it doesn't cause trouble for too long and that it doesn't delay the surgery due on my knee on the other leg.... I'll be miffed if it does.
I hope you don't get any significant reoccurrences too.
Yes RT I think I had this once about 5 years ago. I was travelling across the UK exhibiting and giving talks about an artwork and suddenly the large vein in my already tender left ankle became very swollen, hot and painful - I couldn't get my boot on or weight bear and had to use a wheelchair at the airport to get home.
I didn't bother to see a doctor at the time because I thought I had RA (as diagnosed) and assumed it was a joint flare. It went down with naproxen after a few days but when I told my physio she said it didn't sound like a joint or tendon flare to her as the location was all wrong.
I'm thinking maybe it was this because I've had a few phlebitis since then while sick in hospital with a post op sepsis. I have been diagnosed with Sjögren's rather than Lupus - but I often wonder - especially as my ESR was through the roof at the time.
It's only a risk if you have anti phospholipid syndrome along with SLE. That is a clotting disorder sometimes known as Hughes syndrome. If it's truly a clot you should have it immediately evaluated as it can be life threatening. Clots usually form in the deep veins of the calf but you can get them in other places. Good luck with getting it figured out. Xo
Hi Nantwich, thanks for the information . I saw a GP as the same day that it swelled & became red and hot. I think it's a true superficial vein clot. You can feel the hard area where there's a cot. GPs advice was in keeping with the map of medicine advice.
I was wondering what others experience of thrombophlebitis was.
Thank you for your advice though. There's no evidence that deeper veins are invoked, so PE and CVA are not so likely .
I've had it once, years back, after getting a knock on the leg over an existing varicose vein. Very painful. Went to GPs and he told me to elivate leg and avoid walking and just gave me high dose ibruprofen to take three times a day, but without any stomach protection medicine so I started feeling very sick. Went back and saw different GP who told me on no account to keep leg still and to walk as much as possible! Problem resolved in about a week, but very unpleasant. Leg was left permanently bigger than the other and years later I now have lymphoedema in same leg, but don't know if it's connected or not.
I had it after a PE but before anti coagulation I think you maybe should consider a check for APS
Yes it's not so good and given your history worth pushing for further investigation, good lucj
Feel This Pain: Lupus
Blood test positive lupus
Lobby the houses of parliament 
I was diagnosed with Lupus in March 2012.... Mouth ulcers seem to be a problem.
