So last week I thought I must have banged my leg as I had a red tender area (felt like a bruise coming) but over the week it’s got bigger so decided I better go to the drs. I wondered if I had thrombophlebitis but thought ‘nahhh I’m on warfarin!’ Low and behold I do have thrombophlebitis. This is he second time now since my DVT and diagnosis 20 yrs ago but this time it’s much bigger. Anyway got some cream so fingers crossed that will do the trick!! Does anyone else on anticoagulants get thrombophlebitis???
P.S I haven't posted in a very long time now so Hello again xxx
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kateb81
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Hi there, I understand you have been to the GP, but do please keep a very close eye on this, if your leg keeps getting bigger or you feel unwell please seek another medical opinion. mayoclinic.org/diseases-con... MaryF
Hi hope you are feeling better. I've had thrombiphlibitis in my leg twice now in the past 18 months although I 'm not on warfarin but on apixaban. Doctor wasn't much help apart from giving me cream to help with bruising. I've now taken decision to wear compression socks daily to see if they help. As Mary please keep a close eye on it.
( I had a quick read of your previous posts... quite a profound journey you’ve been on. What a lot we all learn from one another... and from this life we lead!)
Can you tell your husband a huge thank you for the Tour de France fundraiser tour? ?!?!
He’s now one of my heroes 😊.
To answer your question, yes. I have quite a lot of experience of DVT’s and ,"thrombophlebitis,” although my vascular surgeon tells me this is quite an outdated term, and should only ever be called clotting the superficial veins.
The job of the physician is to isolate and define the cause of the clotting within the superficial veins. Sometimes ( often times in the setting of APS) it’s more than one cause.
It can be thought of a cascade affect, or as I like to call it, “ a series of unfortunate events.”
The integrity endothelium of the vessel walls ( any vessel- superficials or deep veins) can become “ compromised.
The veins can spasm. ( series of unfortunate events.)
I have a feeling that there may be a bit of a Vasculitis like response that happens . Whether or not this is a true “ auto immune vasculitis “ in its own right , in my opinion, is something that should be studied separately. In otherwords, I’ve observed from a lay persons point of view - and I’m personally as a patient in the middle of it currently- ANCA and PANCA negative, but having the Vasculitis like rashes, and the superficial clotting. There are still a lot of unknowns in this area of Vasculitis and APS.
I was having the superficial clotting a year and a half before the rashes... this is when I was told about the swelling and spasms... well, that’s Vasculitis. But it very well may not be an auto immune Vasculitis on its own... what if it’s just an APS Vasculitis? This is what one of my Hematologists told me happens... but is was before the rashes enters the scene.
He also prescribed the steroid cream for me.
I have to admit here that he did not know a lot about APS. He was not a specialist. Therefore I did not try the cream... perhaps I should have.
He was however a very good Hematologist.
I am now on steroid injections for the , “Vasculitis like rashes and superficial as well as deep vein clotting”. ( Solumedrol).
I’m also on Rituximab for progressive and Refractory APS which I have failed. It looks like IVIG is next, but the risk of IVIG actually causing clotting in non APS patients is giving my consultants pause. My Rheumatoligist has turned me over to a colleague who deals exclusively in Immunology as opposed to rheumatology.
She and I are thinking that because solumedrol injections have given me me life back in a way that nothing else has, this may well be my particular answer.
I wonder what the cause of superficial clotting is in your particular case? Is it because you were undercoagulated?
Could you also be experiencing,” a series of unfortunate events” and having a Vasculitis like spasms / swelling which lead to clotting of superficial veins?
I will include two links for you to read through.
One deals with PMR GCA and is older, but it can be applied to connective tissue diseases. The data is still relevant. It talks about the advantages of IM steroids over oral in sparing the adrenals and overall side effects of steroid use.
The other is a new publication on APS with regards to... vessels!
PS- the second article I told you I would post I sadly cannot. It is privileged via nature communications. My daughter was able to access it as a scientist at a university. I cannot forward it via this platform.
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Research into why autoimmune conditions take so long to get diagnosed
GP reluctant to refer.
My Moment of Flakiness
