livedo reticularis-HELP

In general, lupus patients are sensitive to the sun. It permeates clothing, so pants aren't a help if we are in direct sun. For me, I can get a sun or heat rash just from being outside too long on a partly cloudy day, away from direct sun. This sounds like what I would consider a "normal" lupus rash - not anything to get too excited about , but certainly something to report at your next dr visit. Of course, if it gets more severe or stays around for a while, there is more reason to mention it to the dr sooner. Hope that helps,

I have Livido Reticularis on my right thigh and ankle and my right wrist. It's found in those with the antiphospholipid syndrome and the anti-cardiolipin antibody. It's a sign of blood clotting issues. But it's not a rash, and it doesn't come and go. It's permanent. Some days it might be brighter, but it's always there. If yours went away it's probably something else.

Have you heard back from your doctor?

Yes, mine went away. However, was in the sun today and it came again but on my left thigh. The rash is bright red and looks like a big net cast on my thigh.



I had clotting tests before a procedure and my clotting was fine.



No news yet on my dx, going to go back to my rhuem. Something is up, this rash is not a normal rash and looks very bizarre, clearly triggered by teh sun

Hey Lynnwood, that's a good question. As far as I know, there isn't anything that can be done about the markings. It's a strange kind of "rash". I guess rash isn't even a good description for it. It isn't raised off the skin, doesn't hurt or itch. No scabbing. It's purple markings under the skin. If I find a good picture of what Livido Reticularis is, I'll post the link. I wouldn't classify it as a rash. Mine get brighter when my APS is more active. I think it's stayed about the same in all the same places for a good 6 years now. It does look like a squiggly, lace-like appearance to it. So King, your description of what you have is pretty much how I would describe mine.

Hey Des! Oh that's interesting to know. I didn't know it could be idiopathic. Actually, mine gets worse in the cold too! I think it has to do with circulation. Thanks for letting us know this info!

I am going to see my rheum tomorrow. I cannot help but think all of my undx symptoms, along w my pancreas inflammation are all connected.

Yes, mine looked like this but much brighter. I sent a pic to my dr, he said it looks like livedo as well and said he suspects lupus. Though I do not want lupus, I would be happy to have a name to all of this odd stuff going on in my body, ESPECIALLY the reason for my pancreas inflammation (as I have been SO scared its cancer)

King, You are a lot fairer than me so yours will be more brighter and more defined in the picture. I had to take mine without the flash because the flash just makes everything white. That's what is so frustrating about taking pics of the rashes plus my camera is not exactly the best LOL.

Rosie, Yeah those are pretty dramatic. Mine have never looked like that thank goodness.

Okay, so went to my rheum today and said (without me even saying a word) the rash I showed her looked just live livedo. She said I either have a stand alone clotting issue, or its associated with lupus (which I am not dxd with). She ran a bunch of clotting tests and a few for lupus. I also read online this can be associated with pancreati***---I have had a very mild form of it so maybe its connected to that, though think it could be more connected to acute. Time will tell I suppose.....

I have been researching livedo reticularis for a couple of years now.   in the fall of 07 i was studying abroad in London and i notice my legs looked weird.  i started to freak out and took a million pictures (hardly came out)  my best friend said that it looked like i was cold and she (very fair skin) gets like that when their cold or takes adderall.  I knew that it was something more.    it stayed with me my whole trip and eventually got worse.     At first it was on my inner thighs and then spread to my whole legs within months.    a year later it started to develop on my inner arms and a few months later my whole arms including my hands.     Now it is starting to show on my stomach.        I have been to 4 rheumatologists and 2 dermatologists-- i found that it is livedo reticularis.   i still have not received an answer to why or how it was caused and how to treat it.   The first dr i went to said that there is no test, no cure, no treatment and i will have it for the rest of my life!    I was so devastated that i am still on a search for someone who can help me.   I have researched many medical indexes in the hopes i will find more info then on the web.      I did however find out that there are many types of livedo reticularis and some are treatable.   There is a skin biopsy that can be done to determine the specific type (i have not done this yet since i have not found a dr who knows a whole lot about this which many know a lil about it).   I have had sooo many blood tests in the past 3 years and everything is normal (thank god but i still rather know what’s causing it).  A few months ago i was slightly elevated in antiphosolipid.  Just recently my blood test showed it in normal levels now.  Actually today i was told that i have a severe vitamin d deficiency.    i was doing research and found that a lot of people with LR have low vit d.  i don’t know if this means anything.   I was told that LR can go away on its own or it can become permanent.         They say the cold can cause it or make it worse but i have found that heat and cold do it.    When my LR is there, my legs and ankles start to swell and throb sometimes when i am standing and sitting.  ugh i wish i could get some help with this and find out whats really going on.  I feel like my body is falling apart and there are so many things wrong with me.  but we gotta have faith that it will all be better (and with some answers) soon.  I know i wrote a lot, i hope my story has helped someone and i hope someone can help me.   There is this article, i suggest taking it to the dr bc it is sooo confusing for a non-medical professonal, called livedo reticularis: an update  written by Mark B. Gibbs, BS, Joseph C. English III, MD, and Matthew J. Zirwas, MD.  it has all the info on LR and it can help your dr with your LR.  This is from a medical journal so it might be hard to get the full article (its 11pgs) on the web by try it and i hope it helps (i don't know how to attach a file to this otherwise i would have)   If any of you are on the east coast there is this dr (i have an app to see him in a couple of months) who is a rheumatologist and a dermatologist.  He deals LR all the time and i would say to my knowledge that he is one of the best and leading drs in treating LR.    Dr. Andrew Franks , he is at NYU Medical Center in Manhattan.   good luck to you all!    

Dr Franks is my hero! He specialises in skin manifestations of connective tissue diseases. Apart from being an amazingly good doctor he is so charming, friendly and always courteous. When I got into remission I had laser therapy for facial redness from the lupus same as they use for spider veins. But he wouldn't use laser for anything if the lupus is active and the patient isn't on an anti malarial for fear of reactivating the lupus. I can't think of anybody I would trust more.

Livedo might have no meaning at all but along with other symptoms it is strongly associated with APS.

You can see Dr Franks giving a talk on skin lupus here

http://www.lupusny.org/show.php?2008_manhattan_tour

BB

Great information about the LR!  Thanks all!  I was dxd with it last spring when the neurologist I went to see saw it on my arms.  The severity of it comes and goes -- always affected by cold and sometimes the heat. 

I first noticed it last winter getting out of a hot shower.  I was covered with it, my breasts, my thighes, the top part of my arms, even my rear end!  It was so ugly.  At the time, I was "off of doctors" and just gawked for a bit, then tried to forget about another weird body thing.  I had no idea it was connected to AI issues/diseases until in the doctors office.  Now I have it on both thighs, my ankles, along the arches of my feet (bottom), both arms (on forearms, too), as well as the top of the breasts.  On occasion, I'll even notice it under my finger nails (close to the cuticle area).  It's always there, sometimes barely noticeable unless you know what it is. 

What it is though, is UGLY.   Going to the beach in the summer, without a deep tan, is a trip.  Still no dx on lupus though.

You won't know if you have lupus until the doctor does the bloodwork. Try not to worry too much. Try to be patient.