Livedo reticularis?

Could I just ask whether everyone has livedo? ( the 'corn beef' rash on legs and elbows)

I was told at my rheumy appt. that it was highly unlikely that I have APS as antibodies are now negative (despite having raised antocardiolipin antibodies previously) and there is no evidence of livedo!

I have most of the other symptoms of APS.

I am at a loss and wondering whether to pay and see Prof. Hughes privately!

10 Replies

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  • Hi there, not everybody has livedo, I don't, and I am also seronegative, having suffered multiple clots in my first pregnancy, I have most of the symptoms including the family history and the childhood migraines, dire reaction to contraceptive pill etc etc, and sister with multiple miscarriages... and my daughter has suspected Hughes and also has systemic lupus. Many people on here have passed all the tests only to have negative ones later on. As professor Hughes says. It is the tests failing the patients rather than the patients failing the tests. I went to see him privately due to the stance on blood tests, it should not be like this, our last patient's day talked very clearly about sero negative APS. I wish you the best of luck with whatever you decide.

    Mary F x

  • Mitzy I feel for you. This is one of the other reasons why being discharged from Hospitals like St Thomas and being sent back to ignorant and ill-informed Doctors puts patients not only at risk but also through unnecessary stress.

    My understanding is that once you have tested positive then you do have APS and the antibodies come and go. Was the test repeated or just positive just the once?

    I am also truly seronegative because I never test positive and when I actually did it has now been viewed with suspicion, also I have a slight livedo when I stand still or when I get out of the shower for around half an hour. I took pictures and showed prof Khamashta who confirmed it.

    Its your decision but you have to consider your peace of mind. If this is something you are going to worry about then it may be worth spending the money to know one way or the other and help with your future medical management.

    Whatever you decide let us know and we will be there for you. x

  • Hi.

    I have livedo reticularis on my legs, arms and on my palms.

    When I feel ill, and the headaces begin. My livedo gets worse.

    I only have the beta 2 glycoprotein antibodies.

    //Theresa

  • This is another 'me too' answer really. I have definite, confirmed APS and secondary Sjogren's but am now always seronegative, and I've never had livedo. Change your rheumy and try to check that whoever you change to DOES know about these conditions. Also go armed with lots of info from Hughes Foundation etc. Don't let the b******s grind you down :-)!

  • I have had all the antibodies from the beginning. 2002 with TIA/stroke. Really high antibodies.

    I did not have Livedo Reticularis until a couple of years ago.

  • i was a patient of professor hughes and occasionally go to see him privately. he always looks for the corn beef marks on my skin. luckily i dont have them. i also often show negative for my antiphospholipid tests but i still have it. dont ignore the warning signs. it is worth going to see him if you can. try and take your national health up to date blood tests with you to save costs if he tests them at the LONDON BRIDGE HOSPITAL. GOOD LUCK Zoe

  • Hi I have confirmed APS/ Hughes and Sjogrens.

    Livedo Reticularis is the first thing that Prof Hughes noticed with me when he first examined me more than 10 years ago. I had always had it and just thought it was "me" and had no relevance to anything! I was surprised when he commented on it as it was something I had always just lived with, that was the first time I had heard anyone call it "corned beef " skin yuk !! I also have a facial mark (rash) but not over my cheeks and nose but between my eyes on the very top of my nose (touch éclat works wonders!!! :) ). Prof Hughes says that this is also quite common and doesn't have to be the "normal" shaped Lupus mark!! Does anyone know what causes this??

    Hugs to all Liz xx

  • I get it on me hands, feet and neck, it made worse when cold, run down according a site The discoloration is caused by swelling of the venules owing to obstruction of capillaries by thrombi. It can be caused by any condition that makes venules swell. Hope tat helps

  • I have had Livedo Reticularis on my thighs, stomach, and arms for over fifteen years. I've tested positive for the antiphospholipid antibodies. The livedo seems to fade at times, and at other times is very prominent.

  • I have the livido, but had no idea that I did until a Dr under Prof Hughes saw it in 2004. I test negative for APS but am treated with warfarin thanks to the professor. Due to all other symptoms. To be honest I am glad I have the livido as it is only outward sign I have.

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