How many of you have the livedo or co... - Hughes Syndrome A...
How many of you have the livedo or corned beef skin and are your overall symptoms related to where it is or how much you have?
I have livedo and it changes with temperature changes; for example, the spider appearance turns purple with cold weather or cold water. It is not related with bad circulation. My symptom for that is pain in the legs, in particular the lower legs.
I do not have this, but my daughter does, quite faint, but nevertheless visible to the naked eye! Mary F x
I have it on my stomach, breasts, ankle, but I have sneddons too. The weather doesn't make any difference. But sometimes it is paler than others. It only came on after I had a heart attack.
I have the beef type on the right side of my face, and livedo reticularis (usually finer, smaller dotted pink rash) all over my body like a second skin. They both darken, (particularly my face) when I am in flare. It also changes with the weather, no matter how the weather changes. It is the act of the fluctuating barometer and such that changes the weather it reacts to .....I think. The most remarkable changes are when I am in flare.
I have had it as long as I can remember, but I also had natural freckles and lots of them. However, I believe it just became my "norm". I learned to ignore it and the pain it reflected. It was probably an unconscious mechanism to divert my attention from pain. I still rather look "through" it. If you can't change it move on to what you can.
Smiles, Canary
Hi...
Yes, I have it. Shows mostly on my legs and arms. Honestly can't say why it is worse at times, doesn't seem to be weather or flare related. Have had it as long as can remember..... know as a young teenager was embarrassed in a bathing suit because of it but had no other symptoms of APS or other health issues.
Leigha
The Professor describes mine as mild livedo and it gets worse in the colder temperature.
I have the rash worse on my knees and all over my legs. Sometimes I see it on my wrists.
I don't think it has anything to do with other symptoms as it doesn't look too bad at the moment yet I feel very unwell.
I have the rash all over my legs and arms. I notice that it is paler in the morning when I get up, possibly because I'm warm and the blood hasn't pooled so much in my legs. By the night it is deep purple. I have had it as long as I can remember. I'm annoyed that it is soo visible but I had to point it out to a dr when asking for a referral to a rheumy. When someone comes in with head to toe pain and livedo for 40 years SOMEONE should notice. I don't find it makes any difference to how I'm feeling although it does react to the cold but then as I have Raynards, that can't help.
Hi I have had livedo all over except my back since a baby it looks worse in cold weather don't know if it relates to where it is to be honest
Sorry cant help more
Hands and legs and feet. Brighter when in pain
Hi, I have Reticularis worst on my knees and above them. Also the elbows It changes very much. More in cold weather of course. I have only had it a couple of years. I mean quite distinct.
Mine is chronic, so much so that Prof. K asked if I would mind showing it to a couple of visiting doctors he had in clinic.
I even had it as teenager. I hate it.
Might audition for alien lizard part in Dr Who! Might as well get something out of it.
X
I have it on my legs, arms, tummy. Have had It for as long as I can remember. Prof Hughes, picked it up even though been under rheumatology for 14 years with NHS! Well what more do I need to say x
The more I think about it is was one of my first obvious symptoms, started on my back in an arc about
Thanks for all of your answers! I saw the livedo ridiculous fist time ten years ago, saw many doctors to find out what it was....this past few months a dermatologist took a biopsy and found lupus anticoagulant, from there lots of lab results confirming Hughes Syndrome. All of the doctors are saying that they had never seen. It except in med school books! Yikes!! Will see neurologist this week,hoping that he do a heparin trial 2-3 weeks. Professor Hughes said that the TIAs and recent stroke should be enough to get at least that.
Hi, I have livedo on my legs (knees to thighs) and arms (wrists to elbows). Much more prominent when I am cold. When I was pregnant 22 years ago it was really bad, so much so that my family and other people were asking what I had done to my arms. At the time I hadn't even heard of Hughes and have only just joined the dots up and realised that I have obviously had APS for at least 22 yrs!
That's really interesting, I saw a real numpty of a rhemy doc, who said it couldn't be livedo as it was affected by standing or the weather and mine sure is. I don't have lupus although have symptoms, my APS doc said it was livedo though, so many conflicting answers from doctors. 
I get the livedo mainly upper legs, knees and my stomach? Anyone else get it there?
Hi, I have livedo on my legs and my arms, feel rather embarrassing about it, especially in summer,always wearing long sleeves.
